Chronic Illness Genetic & Congenital Diseases Profiles

Singing At The Top Of Her Lungs

Julia Rae may have cystic fibrosis, but that hasn't stopped her from being a rising star in the worlds of singing, acting, and pageantry. Oh, while running the occasional marathon besides.

At 17, singer and actress Julia Rae flew to Los Angeles to pursue her dream of becoming a professional singer. A month after she arrived, her lung partially collapsed, again.

Julia Rae taking a selfie.

Rae, now 25, was born with cystic fibrosis (CF), a chronic lung disease. She was used to extreme fatigue, sinus problems, and a nasty cough. For years growing up in Philadelphia, she dedicated herself to extra hours of special breathing treatments to clear her lungs so she could take singing lessons and perform in local theater productions. And it paid off. At 16, a music video she made and put on social media went viral, catching the eye of producers in L.A. Her condition wouldn’t get in her way, she thought.

“I was singing before I could talk,” says Rae, whose older brother, Will, also has CF. It’s a genetic disease that causes the body to make a thick mucus that clogs the lungs. When Rae was born, doctors told her parents she likely would not live to see college.

When Rae was 3, she pointed to Barney singing and dancing on T.V. and asked her parents, how do I get in there? “Music has been my escape, my therapy, my mood lifter my whole life,” Rae says. “It’s how I get through my day.”

Music has been my escape, my therapy, my mood lifter my whole life. It’s how I get through my day.

But then, in L.A., she was rushed to the emergency room. “I was in excruciating pain,” she says. “I could point to where I thought my lung wasn’t working.” She spent weeks in the hospital with her mother at her side. She wrote a letter about her life, and asked her parents to include it in the program at her funeral.

In the hospital, she remembers asking her mother, is this a cruel joke? “I thought, maybe this is the moment when CF is really going to change my life,” Rae says, “maybe this is my time.”

Over the weeks, Rae improved enough to leave the hospital, and she returned home to Philadelphia to recuperate. The year before, she had been named Miss Pennsylvania’s Outstanding Teen, and as part of the pageant’s community service component, she formed a non-profit. She named it Singing at the Top of My Lungs. At home in Philly, Rae threw herself into building up her organization, which raises money to find a cure for CF and to support art and therapy programs at children’s’ hospitals.

“I immersed myself in the CF community,” says Rae, who now splits her time between Philadelphia and New York. “I certainly had those moments when I wanted to give up, but it’s how I coped. It’s what propelled me forward.” That year she hosted a fundraiser with her band at the time, raising more than $12,000 for CF research and programming. Since then, she’s helped raise more than $100,000.

Julia Rae in an appearance as Miss Philadelphia 2015.

It’s a far cry from how Rae handled her illness for most of her life. As a child and teenager, she didn’t want to talk about CF. She didn’t want her friends to know that, until a special treatment vest was invented when she was 7, her mother pounded on her chest several times a day to help open her lungs, or that she was hospitalized at age 6 for a partial lung collapse. During productions, she didn’t want to ask music directors for special treatment. She didn’t want to be a problem, for people to feel sorry for her.

But then at 16, she won the Miss Pennsylvania Outstanding Teen pageant, and she needed a cause for her year of service. Brainstorming with pen and paper, she scribbled across the top of the page, “I need to sing at the top of my lungs for CF.”

“And that became my platform,” Rae says. “I realized I was doing a disservice to that part of me by not acknowledging it.” Talking about her condition has helped her heal. Helping others has given her strength.

Talking about her condition has helped her heal. Helping others has given her strength.

A year after her partial lung collapse at 17, Rae returned to LA and recorded an original song, “Be That Girl” that was featured in the movie The Greening of Whitney Brown, starring Brooke Shields. She also appeared on Radio Disney and has sang for the ABC Thanksgiving Day Parade. She graduated with a degree in media and communications from Fordham University, won the title of Miss Philadelphia, and was then first runner-up to Miss Pennsylvania. She also ran the New York City marathon.

Most recently, Rae’s finished her first EP of original songs, which was released on Valentine’s Day. She co-wrote the music and the lyrics. She’ll also appear in a national commercial in 2018, plans to speak on the Hill on behalf of those with rare diseases as part of Rare Disease Week, and says she’ll also “breathe new life into my non-profit, no pun intended.”

Rae crossing the finishing line at a recent marathon.

She still slips on her airway clearance vest for up to two hours every day to shake the mucus from her lungs. Some days, her cough makes it hard to sing. But she’s also found relief in a new medication that treats CF on a molecular level.

After two months on the medication, “I’m not in pain anymore. I’ve never felt better,” she says. Yet, it’s still a daily struggle living with her condition. “With CF, you can’t take days off, and it gets to you,” Rae says. “But this is who I am, this is my reality.”

As a performer in the public eye, it’s taken time for Rae to feel comfortable sharing her story. She never wanted CF to define her. She wanted her talent to speak for itself. But, admitting to the world CF is a part of her has energized her, it’s fueled her art.

Continuing to talk about CF also helps lift her spirits on difficult days, she says, especially when she’s encouraging children and teens to not let CF stop them from pursuing their dreams. “Sharing my story never gets easier,” she says, “but every time I do it, I’m amazed at the response.”

Chronic Illness Genetic & Congenital Diseases Profiles

MS and Sickle-Cell Can’t Keep This Motorcycle Mom Down

Rona Wiggins was told it was too dangerous for her to get pregnant. But there's more than one road to becoming a mom.

Rona Wiggins’ childhood was filled with limitations: Don’t fly on a plane. Don’t ride roller coasters. Are you sure you want to be a cheerleader? Isn’t that too strenuous?

Then there was the most disheartening limitation: You must never birth a child because it might kill you.

Rona Wiggins with her beloved motorcycle.

 

At first, Wiggins accepted the limits placed on her by caregivers. As a girl, she didn’t realize there were other people like her, with sickle cell disease: a debilitating blood disorder that contorts red blood cells into a sickle shape. The shape hinders the supply of blood, causing a lot of pain and a crisis that usually has patients hospitalized.

According to the doctors she’s seen through the years, Wiggins, now 43, isn’t supposed to be here. She was given “death dates” at 13 and then 21.

Today, she’s living well with sickle cell disease, whether she’s helping others like her through patient advocacy, or riding her beloved motorcycle. The last time a doctor proclaimed she wouldn’t live long, she defied that prognosis and celebrated with an “I’m still here” party at age 35.

But her journey is certainly filled with twists and turns. Soon after her party, Wiggins was diagnosed with relapsing-remitting multiple sclerosis.

“I was angry with God. Was I not a good steward of sickle cell?”

“I was angry with God. Was I not a good steward of sickle cell?” she remembers asking after the MS diagnosis.

Still, Wiggins has tried to remain resilient. She is determined not to let these conditions stop her from becoming a mother.  The Virginia native who lives in Murrieta, Calif., spends her days preparing to foster, then adopt, a child.

Becoming A Mother With Sickle-Cell

At 18, Wiggins experienced an ectopic pregnancy miscarriage. Later, she held off on having children until she found the right partner.

“As a child, I had dreams to be married by 21 and have a child by 23 and the next child by 25 but that was not my story,” she says.

But for several years, motherhood was tugging at her heart. She considered adopting a child, so she contacted an agency to see if she was qualified as a single, gainfully employed  woman living with sickle cell.  All was good, except for the sickle cell.

Rona staying sassy in the hospital.

“I was told that due to the nature of my disease I would need an extensive care plan in the event of my untimely death or untimely hospitalizations,” she says. “I had family but they were busy taking care of my ailing grandmother and they did not have room for anything else. So, I abandoned my hopes of adopting a child and prayed for a husband.”

Then, at 39, she married Antwoine Wiggins and became an instant mother. He was already the father of six, including one child who was deceased and one who was adopted. When the couple moved to California, they brought his son with them, and a daughter later joined.

Before the two teens graduated from high school, the Wiggins began talking about options to expand their family.

Roadblocks

The Wiggins explored surrogacy, but with Rona’s condition, and her husband’s G6PD deficiency (which can cause anemia in certain situations), they’d have to do a lot of “tinkering with the egg and the sperm to get a child without these illnesses.”

The Wiggins family.,

“I even asked the oldest daughter if she would be willing to carry our child but she is having such a hard time with our second grandchild that she said she will not be having anymore,” Wiggins says.

So they considered adopting a newborn from a mother who was giving her child up for adoption. However, they were uneasy about the potential for the mother to change her mind. It was a situation they weren’t sure they could handle.

The next logical option was becoming foster parents with the goal of adopting.

“With that option, we would know for sure that the parental rights had been legally terminated and that the child would be ours,” Wiggins says.

The process has been long and tedious, filled with state clearances, fingerprints, tuberculosis tests, physicals and classes.  In classes, the coupled learned about discipline without hitting, mental health issues, effective communication, transgender and sexual issues in children, water safety, and CPR.

But the end is now in sight. They expect to have a child in their home no later than April.

“I’m looking forward to the heartaches, the anxiety and the sleepless nights,” she says. “But nothing is guaranteed.”

Keeping Faith

Meanwhile, Antwoine was recently deployed.

“With or without my husband, my desire to be a mother and raise a child has been in me and continues to burn in me,” Wiggins says. “I have the gift of helps and I know that raising children can be stressful but when you have a loving husband, supportive parents and God on your side, you can accomplish anything.”

Given her dual diagnosis of sickle-cell and multiple sclerosis, Wiggins notes there may be days where her limbs don’t work right, where it will be hard to make her appointments with doctors and specialists. But to hear her tell it, these are challenges for every parent.

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents…”

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents,” she says. “Tomorrow is not promised to anybody but all we can do is do the best with the skills, knowledge and abilities in which God has bless us with.”

She adds, “In all of my anxiousness, my disappointments, my stress, my range of emotions, my heart continues to long for a child that can join our family and can make memories for a lifetime.  I do not want to be an old lady with this desire still burning in my heart.”

Essays Genetic & Congenital Diseases Rare Diseases

Spider Hands

How Marfan Syndrome killed my music career, replaced it with a writing career, and helped me see the connective tissue flowing through everything.

“You have spider hands,” the doctor said.

Known formally as arachnodactyly, it was the thin, elegant structure of my hands that—along with the abnormal curvature of my spine, and my generally compromised immunity—lead to me being diagnosed with Marfan Syndrome when I was 15.

From that moment on, my relationship with myself, my illness, and the world have been reflected by what I do with those long, delicate fingers; those slender, hard-working spider hands that, through Marfan Syndrome, transformed me into a writer.

Marfan Syndrome is a connective tissue disorder. According to the Marfan Foundation, signs and symptoms include long arms and fingers, a curved spine (otherwise known as scoliosis), a chest that sinks in or sticks out, overly flexible joints, flat feet, crowded teeth, and inexplicable stretch marks appearing on the skin. The syndrome often results in vision problems, asthma and sudden lung collapse, as well debilitating heart problems, the most serious and fatal of which is aortic dissection: a literal tearing apart of the tissue layers in the heart.

Alex J. Coyne as a young guitarist.

Luckily, I’ve yet to have an aortic dissection, but many of the other symptoms of Marfan applied to me, including scoliosis. Over the years, in fact, I had several Marfan-related surgeries. Despite that, though I ignored my symptoms best I could for several years after diagnosis. But part from the checkups and occasional surgeries, I acted as if the syndrome didn’t exist.

Then I turned 19. Precocious, I’d built up a budding career as a professional live guitarist playing the local blues circuit, but the pain in my back had been worsening. We were just about to line up some new gigs when a sudden nagging cough and chest pain made me stop. After a thorough check and an MRI, the doctor’s bad news hit hard. My back was degenerating, and I was told I soon wouldn’t be able to pick up anything heavier than a bottle of milk.

As a young guitarist who needed to carry a heavy Les Paul around with him everywhere, the news was crushing, to say the least. I’d long prided myself on my ability to use my slender and dextrous spider hands to make a difference in stranger’s lives through music: now, my career had seemingly ground to a halt when it had barely started.

My partner and I agreed that we needed to find an alternative to performing. So I turned to my second love, writing, and I haven’t stopped since.

Not that it was easy to get started. We must have submitted pitches to a hundred publications before I sold my first piece: an article about Endometriosis that sold to a South African women’s interest magazine. Shortly after, I made my second sale: a piece on collecting guitars, sold to an investment publication. From there, the commissions started coming in regularly, and today, I am a full-time writer.

But Marfan Syndrome did more than just put me on the path to being a writer. I like to think it has made me a better one: more thoughtful, more curious, more deliberate, and more concerned with the connective tissue that flows through everything… not just my body, but the world itself.

Marfan Syndrome made me a better writer… one more concerned with the connective tissue that flows through everything…

The truth is, Marfan has influenced every aspect of my writing. Take research, for example. A freelance writer needs to become an expert on anything they’re paid to write about, so research is an important part of the job. I take it seriously, because I strive to keep people informed, and part of that is because I’ll never forget how perfunctory, how blase that first doctor was when I asked him what Marfan Syndrome was: “Wikipedia it. I can’t tell you more than what’s on there.” I never want a reader to feel as in the dark about an issue as I felt on the first day of diagnosis.

Marfan Syndrome has also helped give me a fresh perspective on what I write about. When I write stories about, say, the state of South Africa’s hospitals, or how and why readers should draft up a will, it is Marfan that serves, in a very real way, as my muse. These stories have urgency for me, because I could be the one in an underfunded hospital, struggling to survive an aortic dissection. I could be the one whose will might be needed in the next few years.

Mortality, too, plays into it. Writing also gives me hope that something about me will live on after my death. Because Marfan Syndrome is hereditary, I decided to have a vasectomy early in life; I didn’t want anyone else going through what I’ve gone through. But in a way, the articles I write are my children, in that every word I put to paper will be around a lot longer than I’ll have time to see.

Writing also gives me hope that something about me will live on after my death.

Who knows? 1,000 years from now, maybe some futuristic archaeologist, hunched over in a landfill, will pick up the dusty brick of some old hard drive with their slender hands. Maybe that hard drive will have a copy of this article on it. And when they read it, maybe they’ll realize they have Marfan’s Syndrome too, and go get treatment for it.

Far fetched? Sure. But even when I played guitar for a living, all I wanted was to create something, to move people, to make a difference in their lives. That career path was closed off to me due to Marfan Syndrome, but it also opened another door—the door to writing—where I could do the same thing. And, with my spider hands, I’m going to hold that door open as long as I can.

Genetic & Congenital Diseases Q&As

What It’s Like To Live With Sickle-Cell

The blood disorder, which primarily affects people of African descent, shows the ways in which racial prejudice can cause the health care system to break down.

When Damian Jackson was a young man, some lawyers helped his family out. “I admired them,” he remembers. “They were smart, and they helped people out. I thought it would be a good thing to go into if I could.” Now, Damian’s a litigator with close to two decades’ trial experience and around a hundred jury trials to his name.

Damian’s desire to help others out doesn’t stop when he leaves the office. The Philadelphia man spends his free time speaking up for sickle-cell sufferers, helping them access the health care they need during a crisis, and working to raise awareness of a disease that’s largely misunderstood by medical professionals.

Damian Jackson has had sickle-cell disease his entire life.

Damian says he’s lucky. After all, he’s had fifty years of pretty good health. This could be attributed to a balanced diet, enough rest and regular exercise. Or perhaps it’s due to his parents, whose experiences with Damian’s elder sister, also diagnosed with the genetic condition at birth, shaped the way they raised him.

However, despite his good fortune, the defense attorney hasn’t escaped his share of crises – the debilitating bouts of pain experienced by sickle-cell sufferers. Crises are caused when oxygen-carrying red blood cells become distorted, forming a sickle, or crescent shape. The pain is immense, and during his last crisis Damian was unable to do anything else than reach for the phone and dial 911, before spending three days in the hospital.

But these episodes have been rare, and despite a few aches and pains, Damian just gets on living the best life he can: lifting weights and running on the treadmill each morning, going to the movies and spending time with his wife of fifteen years, Dionne. He’s recently taken up golf, and started going to yoga classes.

Damian’s softly spoken and polite as he explains how sickle-cell disease has shaped, but not overtaken, his own life, and how important it is to raise awareness of the condition within the medical community.

Sickle-cell disease varies in its symptoms and severity. How has it affected you?

I am very fortunate that my case has been mild for the most part throughout my life. Thankfully – I’m knocking on wood as we speak – I haven’t had a crisis situation in about fifteen years. That’s very unusual. I’ve had other issues with my sickle-cell, some aches and pains where I think, okay, I need to sit down for a while, but not a full-blown crisis where I’ve had to go into the hospital and be under a doctor’s care.

I know some people who have the disease who are totally disabled, they cannot hold down a full-time job, they can’t do most things for themselves because they have such frequent crisis situations that it affects their day-to-day living.

I did have a wound on my ankle this past year that was very slow to heal, doctors attributed the slow healing process to my sickle-cell, believing there wasn’t enough oxygen getting to that area. That’s a side effect but not something I’d consider as a crisis.

What happens in a crisis?

Normally a red blood cell is circular, but with a person with sickle-cell, theirs are in the shape of a sickle. What happens is from time to time, these cells will start to clot in a certain area, on a blood vessel, and that’s what causes the pain. This is known as a crisis, and it’s an episode of pain, often very severe. Normally it would cause you to receive intravenous pain medication, and be in the hospital for several days, possibly weeks.

What triggered your last crisis?

I’ve always try to say what factors triggered a crisis—was I running myself ragged, did I do anything extra—and I’ve never been able to come up with a cause. I’ve talked with others, and repeatedly people will say I wasn’t doing anything out of the ordinary, it just happened. It’s really unfortunate what happens with sickle-cell it just happens.

My last crisis was about fifteen years ago. Every person who has sickle-cell has an area on their body where they have their crisis, and for me it’s always been my back. I was in such excruciating pain I couldn’t do much more than call 911 and the emergency rescue had to come and take me from my apartment to the hospital because I couldn’t walk at that point. I was in hospital for three days.

Is your good health down to your lifestyle, or is it simply luck of the draw?

I attribute it to the way I have lived. I was diagnosed at birth, and my older sister has sickle-cell disease too, so my parents knew from an early age that there were certain things they could do early on that could potentially help me, like getting enough rest, having a proper diet, things of that nature. Since I had those at an early age they have benefited me throughout my lifetime.

I try to maintain good eating habits, eating lots of fruit and vegetables, I don’t sleep a lot, I never have, but I do try to monitor that and make sure I don’t run myself ragged.

Is there any stigma associated with sickle-cell disease?

One of the big problems with sickle-cell disease is that you’ll have an episode of crisis and go to the hospital and run into a doctor who’s not familiar with you. And you tell them that you’re in pain, and doctors are automatically apprehensive about giving you pain medication. So they might not medicate you enough to relieve you enough, which means you’ll experience even more pain.

Couple that with the fact that SCD primarily affects people of African descent, so you have these African Americans going into the ER seeking pain medication and you get a doctor who’s not familiar with the disease. They can’t give you an objective test like taking your temperature to see how much pain you’re in, and they’re somewhat apprehensive. They have whatever stereotypes built in so they give you the least amount of medication possible, then they want to put you back out of the hospital onto the street.

How do you think sickle-cell disease would be treated if it was a Caucasian disease?

I point to Tay-Sachs disease which does affect Caucasians but it’s even more rare. But when someone with this presents at the hospital the medical community has a greater understanding, and they’re not stigmatized as drug seekers or anything else.

A friend of mine with sickle-cell was in Texas, and went into crisis pain. This person is in the medical community, they were actually working at the hospital where they went into the ER. The hospital staff knew who they were and they still treated them the same way just because they were an African American, presenting with sickle-cell pain. The doctors actually refused to give adequate pain medication and medical treatment until my friend’s home physician got in touch with the doctors and explained what was going on. I thought that was unbelievable. They wouldn’t take the word of their own colleague, who was a medical professional, because they had a lack of understanding.

Sickle-cell patients just want to get pain relief, and if you can stem the tide of that pain early, we can be out of your hair in a much shorter time.

Sickle-cell patients just want to get pain relief, and if you can stem the tide of that pain early, we can be out of your hair in a much shorter time. Unfortunately the medical community doesn’t understand that, and with trying to piecemeal the pain away, they just extend the whole process.

Usually if I go into the hospital where doctors and staff aren’t familiar with me, I know I can call someone in the hospital administration and talk to them, and they’re going to exercise a certain amount of power on the doctors who are treating me, so I can get what I need. But your average patient—who will also be in pain which affects their ability to advocate for themselves—isn’t going to be able to do that.

As carriers, did your parents ever express guilt over passing the sickle-cell trait onto you?

They’ve never expressed it but I believe it is there. Just certain conversations I’ve had with my mum over the years. She’s never come out and said “I feel so guilty you have the disease” but she has said she will always worry about us. When we were younger, if you catch a cold, a head cold, a bad cold that can sometimes trigger a crisis, your body gets dehydrated, your immune system will get distressed. As small children, going to elementary school, we would get sick a lot. So my mom has said in the past she would worry, sometimes she couldn’t sleep at night sometimes when we were sick because she was so nervous and so worried about us.

Is this same concern a reason you have chosen not to have children?

I didn’t want children. I never wanted to bring somebody into this world who would have to deal with the pain that I went through. I thought, I can’t go through the mental gymnastics while I’m dating and have somebody fill out some type of genetic card before we got serious, I just hoped I would meet someone who shared those same views, and if we did in fact want children we could possibly adopt or do something else. My wife has never wanted children either, but for her own reasons.

How did you approach talking about SCD with your wife, when you were dating?

Sickle-cell’s a lifelong disease. If you’re going to be with your life mate they’re going to need to know how to handle it. That was one big thing I talked about with my wife, when we were dating, that if I ever go into crisis and I need you to speak for me, this is what you need to do. I educated her so that she would know if in fact that time would come and I couldn’t advocate for myself that this is what I’d need.

Sickle-cell’s a lifelong disease. If you’re going to be with your life mate they’re going to need to know how to handle it.

Fortunately, I’ve been mostly healthy since we’ve been married, but I have had pneumonia once, she had to step in and be there for me for that,

How much awareness is there of sickle-cell disease within the African American community?

Most members of the African American community either have a family member or know someone with sickle-cell disease, so there is awareness. When my sister was diagnosed my mom really had no clue what the disease was or anything else. She told me about talking to her friends and very few of them knew anything about it until she spoke about it with one of her friends who actually had the disease as well, but back then it was so stigmatized that nobody really spoke about it.

What advances would you like to see for sickle-cell patients?
I’d like to see much greater awareness. Besides the doctors being apprehensive about you receiving the pain medication, a lot of doctors don’t learn about SCD in medical school. I have heard from doctors that they maybe spend a few minutes on SCD throughout their whole educational career, unless they go into haematology. So many doctors are ignorant of the disease.

I also think something that isn’t emphasized enough is within the sickle-cell community is to really think hard about family planning.

People date and fall in love, and a lot of people don’t know they have the trait. Or one might have the disease and the other the trait. But by then, they’re already in love, and about to get married. At that point, what do we do? Because the person with the trait, and the disease link up. Most likely, depending how many children they have there’s a greater chance they will have a child with the disease and not just the trait. So that’s something people really need to think about.

How  do you reconcile living with a reduced life expectancy?

You can’t plan for everything. But I try to live as normal a life as possible and really not dwell on that. I try to eat right, exercise, spend time doing the things I enjoy outside work, and really hope for the best. I’ve understood from an early age that the life expectancy for somebody with sickle-cell wasn’t very promising. But with the advances in medicine and staying on top of things, being an advocate for my own personal healthcare, I think I’ve done all I can do to make sure I have the longest, best life I can.

Genetic & Congenital Diseases Health & Fitness

Fighting Cystic Fibrosis With A Rumble And A Roar

When his condition was at its worst, Paul Underhill designed his own nourishment drink to prevent himself from starving. Now, he sells his drink across Canada to help others.

It’s Good Friday 2011, and Paul Underhill, 41, is being wheeled into surgery at Toronto General Hospital. Instead of being fearful—a typical response to a double lung transplant—Underhill is cheerful. He’s singing.

“I’m on my way, I don’t know where I’m going, I’m on my way!”

Smiling from behind his rectangular, black-rimmed glasses, he sings me the Paul Simon refrain he performed for his nurses six years ago. Sandra Underhill, his wife of 19 years, joins in the singing, but she wasn’t sure what to make of her husband’s playfulness pre-transplant. She was still in shock from it all—numb from months of cleaning blood her husband coughed up, sometimes a cup at a time, and traumatized by all the ambulance rides, not knowing whether he would survive the wait for new lungs.

Born in Victoria, British Columbia, Canada, Paul Underhill was diagnosed at six months of age with cystic fibrosis (CF), a genetic disease that affects the digestive system and the lungs. In the 1960s, a CF patient was lucky to survive to age 10. Today, many still succumb before their 30th birthdays—fluid fills the lungs and hardens, gradually shrinking lung capacity until there is none at all.

Most people with Underhill’s type of CF don’t live to adulthood. The lungs that saved him arrived in the nick of time, the blessed news delivered by a nurse named Grace while Sandra’s father prayed for a miracle at the church across the road from the hospital.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song. That’s Underhill—fearless, and a fighter.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song.

“The question that is inside of me is ‘why not?’” he says. “What I’ve learned about myself is that I’m powered by possibility and passion for things that I love… I don’t let fear interfere with what could be.”

Growing up, Underhill performed his lung-clearing exercises twice a day, then participated in his favorite activities—running, soccer, and cycling. At age 15, he competed in the British Columbia Summer Games for cycling. At the University of Victoria, he met his wife and graduated with a bachelor of arts and a bachelor of laws.

“Paul always had a cough, ever since I’ve known him,” Sandra says, referring to the characteristic feature of a person with CF. “When you find a partner and you fall in love, you don’t think about things getting worse. I never thought about [cystic fibrosis being fatal].”

By his early 30s, Underhill’s health was deteriorating rapidly. He was forced to leave a job he loved with the provincial government, but he stayed active, even kite surfing as long as he could. (He maintains it’s the best lung-clearing exercise around.)

Paul Underhill designed his own drink, Rumble, to gain weight back after cystic fibrosis began shutting down his lungs.

To fill the void, he devoted himself to a new passion: keeping himself well nourished, which would aid his recovery come transplant day.

“I realized I couldn’t rely on my doctors, no matter how great they were, to keep apprised of the latest research,” he says. “You have to look at what the science is right now.”

Underhill poured through medical journals, researching new treatments for CF and lung health. Sandra helped, too, studying nutrition and the link between diet and disease.

“It’s not in Paul’s personality to sit back and wait for things to unfold,” Sandra says. “When he wants something, he goes full steam ahead—and he wanted to stay as healthy as possible.”

Combining their research, husband and wife noted a high correlation between inflammation and many degenerative conditions. Add to that evidence that CF patients with good nutrition have better lung function, and Underhill set out to concoct a nutritious super shake that his body could thrive on.

“I was looking for a beverage of the highest quality that was easy to digest. I looked everywhere and couldn’t find (what I needed),” says Underhill, who is diabetic in addition to having difficulty absorbing nutrients, because of his CF.

The recipe for what would eventually become the drink Rumble took six months to develop in the Underhills’ kitchen. The shake had to be gluten-, lactose-, and soy-free, low in sugar, and free of genetically modified organisms.

“Most important of all, it had to taste great. That’s what took so long in the kitchen, perfecting the taste,” says Underhill.

Rumble—named for the sound the body makes to declare its need for nourishment—comes in three flavours, Dutch cocoa, vanilla maple, and coffee bean, all naturally sweetened with organic maple syrup, organic agave nectar, and vanilla bean. Using organic oils as its base, the drink is light and fluid, not chalky, and has no aftertaste.

Once Underhill was satisfied with the shake, he realized he had a product he could bring to market. In 2008, he launched Rumble with three partners.

Throughout the process of creating the business, Underhill’s CF worsened. At one point, he needed two oxygen tanks to breathe. He couldn’t even brush his teeth without help. As he waited for a life-saving double-lung transplant, he relied on his shake for nutrients to keep his body as healthy as possible.

“The biggest risk pre-transplant is that you get so skinny you’re not going to do well afterward,” he says, noting that three years post-transplant, he was “two pounds heavier than the day I got transplanted, because Sandra made my shake, the essence of Rumble, every day.”

Underhill was living proof the drink lived up to its promise to be a nutritious, protein-rich super shake.

Rumble’s biggest challenge was finding a production partner who could work with its delicate ingredients like organic flax oil, which is rich in omega-3s and believed to reduce inflammation. The team persevered, determined the oil would remain an ingredient alongside pomegranate, red beet juice, organic spinach, kale, and Rumble’s signature protein blend.

“We searched for months until we found a partner who could work with organic flax seed oil,” says Underhill, noting the beverage is made in a secret facility in the Unites States.

Today, Underhill sells Rumble in Canada as a nourishing drink at over 3,000 grocery stores.

Rumble is also the first drink in Canada to be labeled a “nourishing drink” by the Canadian Food Inspection Agency. The category was created in 2012 just for Rumble, which didn’t qualify as a meal replacement because its ratio of omega-6s to omega-3s didn’t match CFIA guidelines. To be a meal replacement, a drink needs to contain a 4:1 ratio, but the Rumble team follows new research that shows the quantity of omega-3s should be double that of omega-6s for ultimate health benefits—hence the importance of the flax seed oil.

Branded aluminum bottles highlight the protein content – 20 grams – and the drink’s promise to “feed the good,” with its more than 3000 mgs of omega-3s, eight grams of fibre, 400 mgs of calcium, and natural fruits and vegetables.

In Canada, Rumble is available in more than 3,000 grocery stores and online on Amazon.ca. The company did a test launch of Rumble in the U.S. in 2015 and 2016 to great success; now, the Rumble team is working with a new production partner to prepare to re-launch online sales in the U.S. in 2018.

“Rumble didn’t exist when I was waiting for transplant, but what did exist was Sandra,” Underhill says. “She made my shake—the essence of Rumble—daily to keep me alive.”

“A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another.”

With new lungs and a new lease on life, Underhill forged ahead after his surgery. A year post-transplant, he won five gold medals in the Canadian Transplant Games. Two years post-transplant, he biked 750 miles for a fundraiser for Cystic Fibrosis Canada and helped raise hundreds of thousands of dollars for CF research.

Rumble has brought Underhill full circle: he developed the drink to keep himself alive, and now, the success of the business has become the perfect platform for him to advocate for both CF and organ donation to help prolong the lives of others.

Meanwhile, he continues to face health challenges. The anti-rejection medication he takes is harsh on his kidneys, which have been causing him problems. “A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another,” he says good-naturedly.

But like every other challenge Underhill has encountered in his 47 years, he faces those to come with a positive mindset. “When I meet a challenge, when I hear I can’t do something, I think ‘Yes, I can.’ If you want to see me do something, just tell me I can’t.”

Genetic & Congenital Diseases Profiles Rare Diseases

Riding, Running, and Swimming To Beat A Fatal Genetic Disease

Justin and Lexi Clark aren't just in a race against giant axonal neuropathy, the disease that could kill them. They're in a triathlon.

Justin Clark, 16, and his little sister Lexi, 12, should be in wheelchairs.

Most kids with giant axonal neuropathy (GAN), a fatal genetic disease, stop walking at age 10. When they hit their 20s, they can’t eat or breathe on their own. They’re hooked up to feeding tubes and ventilators. Vocal cords paralyzed, they can’t speak.

But Justin and Lexi are lucky. Justin’s on his varsity swim team and mans the spotlight during his school’s theater productions. Lexi dances, sings, swims and competes in triathlons.

“We have a slow progression,” says their mother, Lagenia Clark. “We don’t know why, but we’re grateful.” And the slower GAN progresses, the more likely it is a cure will be found in time to save the Clark siblings’ lives.

Lexi and Justin at Christmas.

It’s a balmy summer Tuesday evening, and air conditioning blasts through the family room of the Clark’s home in Houston, Texas. Justin lounges in an oversized leather chair. His twin brother Jared–who is a carrier but does not have GAN–sports a triathlon T-shirt and gym shorts. Lexi sprawls across floor next to Reese, the family’s toy poodle.

It was five years ago when Justin, then 11, started tripping and falling at school. His arches were so pronounced he couldn’t walk normally. His doctor thought it looked like a classic case of CMT, an inherited neurological disorder that’s serious, but not fatal. Test results were inconclusive, and the pediatric neurologist told Lagenia and her husband, David, to get whole genome sequencing. The doctor said the test, which had only been available to the public for 18 months, would give them information about their genes, and they hoped also shed more light on Justin’s condition.

Results revealed Justin had GAN, a rare disease that results in progressive nerve death. Lagenia and David each have a recessive gene for GAN, but are healthy. They were floored. No one in their extended family had ever had a neurological disease.

A classic indicator of the disease is kinky hair. Lexi always had tight, blonde curls. Petrified, the Clarks had her tested too. Lexi, then 7, was diagnosed two months after Justin. “I felt like the floor had dropped out from under me,” says Lagenia. “I spent a lot of time in disbelief. I cried buckets. I read every white paper I could get my hands on.”

Still, they couldn’t do nothing. So they picked themselves up and started a charity.

Jared racing in a triathlon to raise money for GAN research.

Early on in planning, Lagenia asked Justin what he wanted the theme to be. “I remember exactly where we were,” Justin says. “We were on the way home from school. It was a Tuesday.” Justin had peered out their car window at a tire store, noticed a group of tires with three spokes. The word “tri” popped into his head, then “triumph.”

“That could work, I told myself,” says Justin. “Justin’s Triumph.” It was only a few weeks after that when a family friend made a connection between the charity name and the family’s penchant for doing triathlons. “We were all shocked and raw and not thinking clearly,” Lagenia says. “It hadn’t even dawned on me at the time.”

Their group, Justin’s Triumph Over GAN, uses multisport races to raise money for research into Justin and Lexi’s rare disease. Jared, who’s always been athletic, has jumped into the cause. He’s participated in dozens of half Ironmans and Olympic distance triathlons under his motto, I Tri for GAN, to raise money to help his siblings.

“I started doing triathlons when I was seven,” Jared says.

“Jared has always pushed his bounds,” says Lagenia. “He rode a bike at four and potty-trained himself at 16 months.”

Jared’s first race wasn’t smooth. He put his helmet on wrong and was last out of transition, but he finished the race. David chimes in from across the room. “The next day you said you’d never do it again. And then the day after that, you said ‘that was pretty fun. I think I’ll do another one.’”

Jared competed in his first adult race when he was 9. Now, he’s creator and captain of his high school triathlon and mountain biking teams, he’s on the varsity swim team and runs cross country and track. He hopes to become the youngest athlete in the world to have ever completed 100 adult races. At the end of the current season, he’ll have completed 90 multisport races.

Justin’s Triumph has raised hundreds of thousands of dollars in the search for a cure for GAN. Jared raised $10,000 alone last year when he organized a Youth Splash & Dash at Houston’s Jewish Community Center for his Eagle Scout Project. It’s now an annual event. Lagenia, David and Lexi have also competed in triathlons. Justin has, but he prefers to just swim. Reese has also helped raise funds during a Doggy Splash & Dash.

The Clark family.

“Most sports have a winning team and a losing team, but triathlons are not about winning,” says Lagenia. “There are no losers. Everyone gets a medal if you cross that finish line. You can walk across it. You can run across it. You can cartwheel across. It’s a sport you can do for life. It’s something you can do with your family.”

After registering for a race, triathletes—from pros to first-timers—can sign up to raise money for Justin’s Triumph through the Reason2Race site. All funds go to Hannah’s Hope Fund, a New York GAN non-profit the Carters partner with.

Most recently, money has been used to fund pre-clinical work of a GAN gene therapy clinical trial run by the National Institute of Health. Doctors are using a genetically modified virus to deliver a healthy GAN gene to the central nervous system of children with GAN. The Clarks hope Justin and Lexi will be selected to participate in the trial.

“We can be groundbreaking,” says David. “If the virus works, there are implications for treating other neurological diseases.”

Jared and Lexi are intent on beating Justin and Lexi’s rare genetic disorder.

When they were first diagnosed, Justin and Lexi underwent multiple MRIs. Lexi remembers crying inside the machine. Justin had reconstructive surgery on both of his feet and legs to help him walk. In the family room, he kicks off his sneakers and peels off his socks to reveal his corrected arches. He can’t run anymore though, and he uses controls when he drives. “I’m losing the function in my pinky fingers,” he says.

Lexi can run, but she’s easily fatigued. They’re both aware that GAN patients eventually succumb to severe scoliosis. “That’s a fear of mine,” says Justin. He’s found an outlet for those fears in writing. In a piece published last year in his high school’s literary magazine, Justin wrote, “I’m Lost. I’m Lost. I cannot see. The darkness it surrounds me. I cannot run. I cannot hide. Death, death is all I see.”

Driving around Houston, or Seattle or Ohio, motorists might spot a Justin’s Triumph car magnet. Lagenia is often surprised by where the magnets they decided to create for their cause end up. She’ll hand them out to anyone interested in learning more about GAN. “It’s all about helping spread awareness,” she says. “When it’s such a small disease, everything is grassroots, and however you can spread those roots, the better.”

Genetic & Congenital Diseases Health & Fitness

No Pain, No Gain

Fitness instructor Leslie Nava teaches at a Brazilian Jiu-Jitsu gym to spite the rare disease which runs in her family... and to inspire her son, who was born with it.

One of the biggest obstacles to getting in shape is the struggle to get out of bed and walk out the door. Leslie Nava, who teaches strength and conditioning at her husband’s Brazilian jiu-jitsu (BJJ) academy, knows that struggle better than most: she has Neurofibromatosis Type ii (NF2), a disease which causes benign tumors that can lead to hearing loss, paralysis, and even death. Her brother died from it, and her mother and sister have both lost their hearing from it, but the people who really motivates her to come into the gym every day are her children. They also have NF2, and it is for their sake that she aims to be an inspiration on never letting her body get the best of her.

Leslie Nava teaches high impact interval training at a British Jiu-Jitsu gym. Photo: Chris Academia Photography

It wasn’t always the case. When her son was first diagnosed with NF2, “I just kind of gave up for a while,” Leslie says. She only came into her husband’s gym, where she was a student, to help break her out of her depression. At first, even showing up to class was difficult, let alone doing the exercises. “You get dulled with feelings of depression sometimes,” she says. “I really learned a lot about the mental aspect of pushing ahead. If you can get that down, the physical will catch up.”

Even without depression, working out is challenging for Leslie. She had two brain tumors removed when she was 18, and then again at 24. These surgeries left her with a balance deficit, making Leslie struggle initially with lunges, step-back lunge hops, or plyometrics. Eventually, though, she worked past it. “You can reteach balance to your body even though those balance nerves won’t reconnect. I’ve re-taught my body how to accommodate to make up for the lack of balance.” Most people these days can’t tell Leslie has any balance issues at all.

Another physical limitation Leslie needed to work through is a tumor on her wrist, which makes it challenging to do wall stands and pull-ups, or any exercise that requires her to flatten and bend her wrist. “It put so much pressure on that tumor that for a while it was really hard to deal with,” she says. But while dealing with her tumor, Leslie discovered something: while it’s important for her to listen to her body when it’s in pain, she says she’s also learned that if she fights back, her body has to listen. The order she gives her body at times like these is simple: “Give up or go forward,” she says. “And giving up is not an option. My body knows me by now; we’re going forward.”

“Giving up is not an option. My body knows me by now; we’re going forward.”

Eventually, Leslie’s practice had improved so much that her husband called upon her to take over the classes she’d been attending when the current instructor left. It was a major hallmark of Leslie’s life. “At that point, I was at a better place mentally and emotionally, and I decided I needed to make some changes in my life. Mostly at the time, it was for my kids and my husband, but eventually, it caught up to being for me, too.” She decided that to teach her children how to get through life with a disease like NF2, she would have to lead the way.

Since then, Leslie had gone on to permanently teach high-intensity interval training. A conditioning training used by athletes that uses body weight to train strength, it’s an efficient workout for people looking to maximize their training in a short amount of time. In Leslie’s classes, she focuses on explosive, multi-coordinated movements which will help people switch positions quickly. Anyone can do it, though, as long as their doctor says it’s okay. “It’s more a mental challenge than a physical one,” Leslie says.  

“My goal is to really try and support people where they’re at and help them still feel active.” Photo: Chris Academia Photography

That makes Leslie’s class popular with gym members who are rehabbing from surgeries or have other health issues. She’s taught people who have had everything from knee surgery to cancer.  “My goal is to really try and support people where they’re at and help them still feel active. It doesn’t have to be the same as the person next to them. They can work within their parameters, work where they’re comfortable, and as they build up their foundation, they can kick it up a notch,” she explains. In the process, they learn their bodies and understand to listen more closely to their bodies.

“Everybody’s got a struggle that nobody knows about.”

Part of what makes Leslie so popular in her classes is that she’s open about her condition. “I’ve got struggles. I’ve got physical limitations I’ve had to work through,” she tells her students. “ I don’t tell them that because I want them to feel bad. I want them to realize that they can do it too.”

In other words, Leslie is a role model to her students. That’s doubly true for her son, who comes with her to almost every class. Because he had a tumor on his spine removed, he suffers from drop foot and nerve damage in his leg, so he doesn’t have the ability to do some of the plyometrics. He does a lot of walking with weights, instead. Leslie’s daughter comes with her to class almost every day as well. “It’s a very comforting feeling to have them there with me every day,” Leslie says. This, she says, was her goal: not just to change her own life, but to inspire others.

“Everybody’s got a struggle that nobody knows about,” Leslie says. “We don’t always lay it out there…“I’m not a super fitness instructor. I’m just somebody that is trying to make a difference in the lives of my family and others and show that I don’t let those challenges define me.”

Genetic & Congenital Diseases The Good Fight

License To Drive

For babies with mobility issues, the cool ride-on cars provided by Go Baby Go! are even better than motorized wheelchairs.

City YearWhen Kelly David’s two-year-old son Colin waves and zips around the front yard in his little red ride-on car, onlookers don’t see a toddler with visual or mobility impairments. They just see a regular kid exploring his surroundings and enjoying the Florida sunshine.

“Nobody outside of our circle really knows that [the car is] a form of mobility for him,” David says. “It doesn’t look like medical equipment. It doesn’t draw attention to itself.” David is referring to the car that was modified for Colin through a program at the University of Central Florida (UCF) called Go Baby Go!.

Colin has visual impairments caused by albinism and mobility issues caused by a rare genetic disorder called Angelman Syndrome. Colin’s speech language pathologist at UCF suggested that he might benefit from a modified ride-on car and referred him to Dr. Jennifer Tucker in UCF’s physical therapy department.

David has observed that, since Colin got his car this past spring, it seems to have broadened his worldview. “I think he’s realized there’s more to the world than what’s in his bubble, what was previously in his visual field,” she says. “We’ve seen him figure out how to map around the house now. It’s really instigating and encouraging that exploration by giving him a tool to do that.”

Researcher Sam Logan and a team of volunteers modifying an off-the-shelf ride-on car to be safe for kids with mobility issues.

A motorized wheelchair can cost tens of thousands of dollars since it’s a medical device, but a modified ride-on car for kids costs around $200. “Motorized wheelchairs are much more robust in terms of battery life, and they can go in any direction,” says Sam Logan, an assistant professor at Oregon State University (OSU) who oversees an undergraduate student club that modifies cars. 

The motorized wheelchair industry tends to focus more on adults since kids outgrow them so quickly. The cars Go Baby Go! modifies do not replace the need for other medical devices, but they provide fun and mobility for developing kids.“It’s not a perfect one-to-one solution,” he admits–motorized wheelchairs are still better–but a ride-on car can still give a child with mobility issues the first autonomy they have.

“It’s a pretty big deal for families,” Logan says. “A lot of these kids have not had any access to moving on their own [before].”

“A lot of these kids have not had any access to moving on their own [before].”

In addition to OSU’s student club, Oregon also has a monthly community build night in Portland. “Families will come and they have some of the modification supplies, or families will bring cars,” he says. “In one evening, they’ll modify the cars and families can take them home that night.” Once a child outgrows a car, the family can pass it on to someone else or give it back to Go Baby Go! so another child can use it.

Go Baby Go! started a decade ago at the University of Delaware, and now has 75 chapters worldwide, including a nationwide partnership with BMW New Zealand.

Go Baby Go cars give some children with special needs their first taste of real mobility.

Cole Galloway, a professor of physical therapy at the University of Delaware, received a National Science Foundation Award to study brain development in babies. Galloway’s research showed that he could spur cognitive and motor skills development in toddlers before they could even crawl using an experimental robot outfitted with a joystick. The robot cost tens of thousands of dollars to make and was intended for research. However, families of children with mobility issues desperately wanted one their child could use in real life so their child could move and develop too.

“I would get phone calls from parents crying on the answering machine,” Galloway says. “They kept asking me ‘when it is going to commercialized? When is this going to be available?’ They weren’t seeing it as research, they were seeing it as a real device.” He notes that parents of a two or three year old with mobility issues don’t have the experience of chasing around their child or watching the child chase a family pet, and they often worry about school readiness.

Galloway’s mentors advised him to focus on the research and let the community impact be someone else’s work,  but Galloway couldn’t turn his back. The question of whether he could also spur their development nagged at him. A high school student working in his lab asked, “Why don’t we go to Toys ‘R’ Us … and just build stuff?” Instead of manufacturing expensive robots for research, they bought little motorized ride-on cars and modified them for kids who couldn’t, for example, push a gas pedal or who needed extra trunk support to sit upright.

“Why don’t we go to Toys ‘R’ Us … and just build stuff?”

Instead of patenting these modifications, Galloway shared them freely with the world. Chapters have sprung up in universities, Kiwanis clubs, schools and other organizations. When Fisher-Price called two-and-a-half years ago, Galloway panicked. Would they object to him using the Go Baby Go! name (a name used on many of their toys) or modifying their product?

Actually, they said they loved the concept and wanted him to do a workshop with their designers. Galloway has also conducted a workshop for Daytona 500 and has plans for a workshop with Mattel. These hands-on workshops serve as a team-building activity and also provide a tangible benefit since they’re modifying cars to be used by real kids. “They are interested in corporate giving that provides a personal context,” Galloway says.

High-fives all around.

Aside from the stories of delighted families, Galloway says his preliminary research on children with Down syndrome also supports the use of ride-on cars for therapeutic purposes. “We believe that cognition language and movement are enhanced with ride-on cars,” he says. “A child that hasn’t been moving gets the chance to decide how and when to move.”

As for the David family, Colin started waving his hand after he starting using his car, so it’s also boosted his social engagement. “That’s really the first time that we saw him purposely wave,” David says.

As Galloway says, “mobility is a human right because it affects so much of our lives.”

All photos courtesy of Oregon State University.

Disability Genetic & Congenital Diseases Q&As

How To Design A Room To Heal In

Lynn Goode began thinking differently about interior design after she was diagnosed with multiple sclerosis.

The texture of her bedspread, the way her walls curved, the ridges on her crown molding: When multiple sclerosis left Lynn Goode confined to the dream home she’d bought in Houston, Texas, but never had time to enjoy, she started to notice the details all around her.

Goode, who just turned 60, was first diagnosed with MS when she was in her late 30s and caring for four young kids. The diagnosis came after months of numbness, blurred vision and a drooping mouth. Long before MRIs were the gold standard for diagnosing MS, her doctor told herself to submerge herself in a hot bath and note what happened to her body; she soon became so weak she couldn’t stand up.

After her diagnosis, Goode recovered at home. Although already an art dealer, Goode had an epiphany as she lay within the confines of her four-poster bed, gazing out the window into her lush courtyard: our interior spaces matter. They help heal us.

Through MS, Goode found her calling. She opened Lynn Goode Vintage in Houston, where she revives and sells furniture from the 1950s to 1980s: pieces with a story, a soul. She’s driven to help others create comforting interiors and safe haven spaces, rooms that soothe and heal.

We sat down with Goode to learn more about soothing spaces, how they can help those with chronic illness, and how to create them.

Lynn Goode’s career path changed after she was diagnosed with MS in her late 30s.When you were recovering in bed, you decided to forgo T.V. and impulse purchases on QVC and focus on your surroundings. What did you learn?

I became aware of what brings pleasure in a room and what doesn’t. What colors work, how light works. It allowed me to think about rooms in a different way, as containing individuals, as a form of healing and containment. I got very interested in design after that. Previously I’d designed an art gallery and co-designed a bunch of different spaces, but then, I started collecting modern objects and furniture and being more aware of interior spaces and how they affect us.

What was it about your room that comforted you?

I was isolated at home. I couldn’t go outside, but I could see the flowers and plants in my courtyard through the windows in my room. The design brought the outside in. I remember we had azaleas out there, some ivy and potted plants. It was the greenery that was so pretty. There’s something about flower and plants, the growth, it makes you feel more alive. Also, the textures and the fibers of the fabrics the interior designer and I had picked out together—on the headboard, the bedding, the chairs—the beauty and variety of it all, and the pleasing feel of the fabrics, they all helped lift me up.

How do you help people create healing and comforting spaces?

Our home is such a personal expression of who we are. To create a space that feels like a safe, holding space, first I need to know what a person likes, what they gravitate toward, what they enjoy, what calms them. I use a lot of different textures. For example, I like to use a sheepskin rug or a heavily textured shag, some type of thick rug, and pair that with more streamlined or structured furniture. And then always, in every space, I put a great, big reading chair. It could also be an arm chair and an ottoman.

What about light? What’s more soothing, lamps or overhead lighting?

You need a balance of both. It’s important to have light at different levels. That helps soften a room. I like candlelight and table lamps too.

And what about colors? Are certain ones better for healing?

Colors that have always been associated with healing are yellow or white, pure light. But blue can be very tranquil too, because it’s sea and sky.

Colors that have always been associated with healing are yellow or white, pure light.

Why should we also have plants inside our home?

Live plants are the most important; they filter the air. Ferns are really good at absorbing and recreating a positive inner space.

What are the top three things every healing room should have?

Color is an important consideration when designing rooms to heal in.

A nice rug. A nice rug grounds a room. Interesting light, and by that, I mean a light fixture or lamp that’s sculptural, that has an interesting design. And then a mixture of textures. For example, nubby, textural fabrics with smooth velvets or silk. Different woods. Every room should have some wood, some glass, some steel and an upholstery.

How do you think your diagnosis has contributed to who you are today?

Having a major– and at that time what could have been considered life-threatening–illness in my late 30s, just when I was getting my kids a little settled, it was completely life-changing. It changed everything—the power structure in my then-marriage, my outlook on life. I felt compelled to travel as much as possible because I didn’t know how long I’d be around for. I thought to myself, “no, this didn’t happen to me, this isn’t supposed to happen.” But, it also led me here, to this place where I feel like I’m helping people. Whether it’s a chronic illness, stress or even trauma, everyone struggles with some issue, and everyone can benefit from a comforting space. For me, it took a while to get to a place where I wasn’t panicking. My grandfather had what we now know is ALS, and he died within two years of being diagnosed. But eventually I was able to get to a place where I said to myself, “to heck with it, live.”

Whether it’s a chronic illness, stress or even trauma, everyone struggles with some issue, and everyone can benefit from a comforting space.

Anything else you want to add?

Over the years, I’ve thought about why I gravitate toward older furniture, and I’ve realized a lot of it has to do with my MS. The furniture I find and restore is built well. It still has a lot of good years in it, but it might be damaged. There’s a metaphor there. To not discard or discount something, or someone, because of an imperfection. Furniture—and people—they can both be restored and renewed, they can both be given new life.

Disability Genetic & Congenital Diseases The Good Fight

A Catwalk For All

Inspired by her dapper, disabled grandfather, Mexican designer Annett Castro started Moda Incluyente, Mexico's first fashion show for people with disabilities.

Mexican designer Annett Castro worked for years in fashion, with stints at the country’s National Chamber of the Apparel Industry and creative agency Snoops, when a non-profit organization named Aequalis approached her with a simple question: Would she be interested in coordinating a runway show for people with disabilities?  She would.

“I told them I could help them and I fell in love with the project,” she said, noting her natural penchant to say yes to helping others.

In 2012, she organized a simple catwalk for dozens of non-traditional models in a local auditorium, attended by family and friends. But the event prompted a career pivot. She left her job at the creative consulting agency and started imag, Mexico’s first large-scale fashion show for people with disabilities.

“At the first show I knew this was what I was going to do,” she said.

Mexican designer Annett Castro, founder of Moda Incluyente.

To date, she has planned nearly 15 shows for models with motor, intellectual, visual, auditory, and growth disabilities at venues around the country, including Intermoda–the largest fashion expo in Mexico –and Museo Soumaya, a museum which hosts a part of Carlos Slim’s art collection. Her first international show will take place in Guatemala later this year.

“There was so much interest that we started doing it better and better,” she said, noting that the annual show at Intermoda has attracted crowds of some 400 people.

The catwalks, which include a cast of approximately 35 models with disabilities, are free of charge with the support of collaborators and are put on about three times each year. Over five years, approximately 100 emerging and established designers such as Maritza Peña, Carlos Herrera, and Isa Valdez have also featured their collections.

Some, such as Guatemalan designer Isabella Springmuhl, who has Down syndrome, are particularly familiar with the style needs of people with disabilities, while others design adapted apparel—such as textured or tailored wear for people with visual impairments or smaller body proportions— for the first time.

Necklaces with words etched in braille, leather gloves for wheel-chair users, and swimwear for women diagnosed with breast cancer have also all made their way down the runway.

“I feel like I’m contributing to the world.”

“Each case is different,” Castro said. “Designers meet with the models and hear about their situations before doing their work,” she said, noting that collections are almost always designed around an overarching theme, such as “flight” or “city street.”

All models sit for hair and make-up styling sessions, in addition to photo shoots, and also take home apparel after the show.

“I feel like I’m contributing to the world,” said Castro, who noted the personal motivation behind her work: Her grandfather, who she called Güello, used a wheelchair for eleven years. “He had a blocked shunt in his brain and started to use a cane and then a wheelchair when he began losing mobility,” she remembered. “We always said, ‘Oh, grandpa is old, that’s why he can’t walk.’ But now I understand it was a disability.”

Her grandfather died when she was 18, but continues to inspire the project. “He gave me a love for disabilities,” she said.

The shows have also helped her find a way to combine fashion and altruism. “We don’t see all the opportunities because we focus on glamour, but style is something that can be done in a kinder way.”

“The important thing is to be able to do something good within your profession.”

Castro, who was born in the northern Mexican state of Sonora, says she knew she wanted to pursue fashion from an early age. She studied at the Autonomous University of Guadalajara and eventually worked at the Apparel Industry Chamber and then a talent show sponsored by Elle and Snoops before her career took a turn following the Aequalis show. In the last few years, she has worked at Fundación Para Life, a foundation which helps businesses become more disability-friendly, and Arqcesibilidad, a company focused on increasing accessibility with products such as tactile paving. She still gives classes in fashion at Durango Santander University in Sonora, among other places.

“The important thing is to be able to do something good within your profession,” she said.

On a recent day, she was finalizing music choices and booking models for her next Moda Incluyente show, but she was not worried.

The end result is dependably gratifying, she said.

“I feel like I’m contributing to the world,” says Castro.

“There is a moment when you know the models are happy,” she said, recalling one of her favorite memories. “At one show, a blind couple was going to model. And the wife said to her husband, ‘Feel my beautiful dress.’ And her husband swept his hand over the dress and said, ‘Wow, you are beautiful.'”

Castro broke down and cried.

“We are looking for people who have never thought of being models,” she said. “We don’t want people to say ‘Aww, what a nice show.’ We want them to say, ‘That model was so incredible even if she had a disability.”

Her aspirations are also evolving. She would like to create a modeling agency to promote models with disabilities, and wants to further publicize the Moda Incluyente shows and expand her network of collaborators.

What would her grandfather say? “I think he’d be very proud,” she said.

Moda Incluyente’s most recent fashion show took place in Guadalajara, Mexico on July 19.