Cancer The Good Fight

A Hopeful Lens

How this mom’s personal tragedy inspired a global photography project.

In December 2011, after Cynthia Dawson’s four-year-old daughter Ava started losing her balance, Ava was diagnosed with a terminal brain tumor called diffused intrinsic pontine glioma (DIPG). Ava’s only treatment options were experimental, so the family moved from Texas to Arizona so Ava could participate in a clinical trial.

A self-proclaimed hobbyist photographer, Dawson looked for a photographer in Phoenix who was willing do a pro bono photo shoot with Ava, documenting the girl’s kind spirit and love of pink for posterity. To her surprise and disappointment, Dawson came up empty.

Later, Ava’s tumor progressed and the family returned home to Texas, where Dawson knew a larger network of photographers. Ava had her photo shoot in 2012, one month before she died. At that point, Ava had already lost her ability to walk, so it came at a grave time for the family. “She didn’t understand what was happening to her body,” Dawson says.

Still, dressing up in a pink dress and a sparkly gold crown brought Ava joy. “At her session she was very happy and she was able to be herself and laugh and giggle,” Dawson says. “To have those memories of her being so joyful is something we always treasure. [Those photos] mean everything to us. It’s a physical reminder of her.”

Photo: The Gold Hope Project

The Gold Hope Project

Dawson called that photo shoot the first Gold Hope session. She saw a need for pro bono photography services to help other families dealing with pediatric cancer create memories and share their stories. “When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant,” Dawson says. “Being able to share their child’s journey is so therapeutic, to let the public know, ‘my child is not a statistic.’ I think a lot of the times people hear certain statistics and it’s easy to forget, it’s real people behind the numbers.”

When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant… My child is not a statistic.

To that end, Dawson co-founded the nonprofit organization Gold Hope Project, which achieved 501(c)3 nonprofit status in late 2014. The organization works with professional photographers all over the world (over 500 at last count) to photograph “fighters” (kids battling cancer), survivors, and their families. They also create remembrance photos for kids who’ve already passed. The organization then shares fighter stories on its blog to raise awareness about pediatric cancer. Dawson says proudly they completed their 500th fighter session this summer.

Photo: The Gold Hope Project

Destigmatizing Illness Through Photography

Erin Wilkos’s son Nate is one of those fighters. About a year after Nate was diagnosed with acute Lymphoblastic Leukemia, Wilkos saw a Facebook post about the Gold Hope Project and applied for a session. “We weren’t sure if Nate was going to make it or not,” Wilkos says. “He almost passed away a few times. We figured a professionally done photo, even if it was the last memory of him, would be something we could cherish.”

Fortunately, it wasn’t the last memory for this Connecticut family. “Nate is 15 and is doing absolutely fabulous,” Wilkos says. “He is nine years off chemo and just joined the football team and is a junior firefighter.”

Nate and family still do cherish the photo shoot experience. “The photographer met with him and myself and my husband,” Wilkos says. “Nate was really into the army and liked owls, so she set up the most amazing backdrop and had an army uniform for him. He loved it!”

GPH gives families the option to order an album of images from their session, so Wilkos did. But their album got mixed up with another family. “Our book went to someplace near Alaska and we got someone else’s book,” Wilkos says. “In communicating with her, I discovered she had a farm that had snowy owls. We exchanged books and she sent along a bunch of photos of snowy owls for Nate. We check in every once in awhile.”

Photo: The Gold Hope Project

A Life-Changing Photo Shoot

Of course, the Gold Hope sessions don’t just benefit the fighters and their families. Some of the photographers who volunteer their time and expertise also find the experience cathartic. Having two kids of friends get diagnosed with acute lymphoblastic leukemia and another friend’s kid diagnosed with a rare blood disease “hit me in a way that I couldn’t put into words,” says Brittany Blake, a photographer in Orange County, California. “I knew that I wanted to give back.”

In September 2017, Blake shot her first fighter session, which she describes as “life changing.” Her nine-year-old fighter was in remission from leukemia. “She was so strong but you could also tell cancer had broken her in so many ways,” she says. “I had a daughter who was a year older at the time. As a mother, it was heart-breaking to try to imagine everything this girl had been through.” Blake stays in touch with several of the families she’s photographed.

Photo: The Gold Hope Project

Dawson says these fighters and their families “have a really unique spirit usually and I think that definitely rubs off on the photographers who get to work with them one on one.”

As the Gold Hope Project grows, Dawson hopes to raise money to help fund critical research on pediatric cancers. “The stats are unfair when it comes to pediatric cancer specific research, a fact I learned after Ava got sick,” she says. “Her type of cancer had no new medical advancements in over 40 years due to lack of research. This year we will be able to join other organizations and fund research grants specific for DIPG and we are hopeful that one of these research studies will lead to better treatment options and one day a cure.”

For fighters stories or to find out how you can get involved, check out The Gold Hope Project’s website.

Genetic & Congenital Diseases Q&As

Babies, Get Ready For Blast Off!

When a baby needs an orthotic helmet, artist Paula Strawn is there to make wearing it a lot more fun.

Where most people see a boring white helmet, painter Paula Strawn sees a blank canvas. Aviator shades? Flowers? Beach scenes? The sky’s the limit!

When parents learn that their baby needs to wear an orthotic helmet to correct an abnormal head shape (often due to something called positional plagiocephaly or less commonly cranisosynostosis), they’re often dismayed by the ugliness of the helmet and the unpleasant reactions from strangers.

Paula Strawn of Lazardo Art works six days a week to give these families something to smile about. Parents overnight her their baby’s helmet and she paints aviator shades, sports logos, picture book scenes and any other custom designs the parents can dream up before shipping the helmet back to them. She’s been at it for over a decade, painting thousands of helmets in the process.

Folks talked to Strawn about how she discovered this creative calling and why it helps families view the orthotics in a whole new light. The following excerpts have been edited for clarity and brevity.

How did you get into this niche of painting?

I have always drawn or painted old style artists. I was a stay-at-home mom with kids, and as they got older I started painting more and more for friends and family and then friends of friends. Then one of my two younger daughters’ first grade teachers showed up at my door with her daughter and granddaughter, and the granddaughter was wearing a helmet. She just said, “Paint this ugly thing.”

I did, and in the orthotic office that they were going to, a really sweet man named Kevin Bitting asked if I would paint more. But I was thinking it would just be one more thing in the pantheon of things that I would paint, and here we are, 13 years later, it’s taken over my life and business.

Kevin talked up my work to the parents that came in. He was a total fan of parents having their helmets painted because he saw the difference he made in their attitudes. I’m sure he saw a ton of parents – because I have – that came in crying and really upset that their cute and adorable kid had to wear this thing. He asked for a photo album that I kept updated, so there were photos that were waiting there for people to look at.

How long does each helmet take?

It’s rare that a helmet takes less than six hours to paint. Except for one design that we won’t go into, I paint the same day I get the helmet. If I can paint by four o’clock, then I ship out the same day. And if the design takes longer, I finish it the day I get it, and I ship it the next morning. I work six days a week, and I love what I do.

What designs get requested most often?

Aviator helmets are super fun, because it can be personalized and people put different things on it. I’ve painted hundreds of these things now. For girls, the girl aviator’s super cute, but lately I’ve done a ton of flower designs. I love when it’s the Wild Things or some other book character. I painted the NASA space helmet last night that has the Milky Way reflected in the bezel, which is fun. People come up with great stuff.

How does the process work?

People email me or they get hold of me through Facebook and we do the whole thing by email. They write and tell me what design they’re thinking of. Sometimes I have them send images or I send them images. We talk it through. They don’t have to choose something that I’ve done before. They can come up with some completely new idea. I love when people make me a Pinterest page and invite me to view it because then I can get a sense of what style they like or what colors they like.

Recently, as of this year, we have the deal now with FedEx so that our parents get 30 percent off for shipping, which is super great. We should have done this before, but we had no idea we could do this. My husband does the shipping and the financial end of it and my job is to answer emails and paint until my eyes can’t be open anymore.

How do people respond to your art?

I’ve had many, many parents crying on my couch over their kid having to wear this. I think the design part of it is therapy because then they start concentrating on what do we want on our baby’s helmet, and what colors does he or she look good in. It’s the response they get when they’re out and about with their baby because from what I understand, people get a lot of pity or “Oh, my gosh! What’s wrong with your baby?” But when it’s painted, that just totally flips. Then people are like, “Oh, my gosh! That’s adorable!” And the baby’s getting smiled at or a parent is able to explain a little bit what this is.

I get a lot of parents that will send me a picture when the baby graduates from the helmet to show me their round-headed kid, and they’ll say things like, “We’re so happy to be able to fix his head, but we kind of are missing having that.”

Do some families keep the helmet even after their kid stops wearing it?

Yes, I get a lot of pictures of stuffed animals wearing a baby helmet, which is amusing. I did one helmet for a big Notre Dame fan dad and it ended up in his Notre Dame cabinet of things. He played football for Notre Dame back in the day and so it sat next to his helmet in his Notre Dame cabinet.

Where does the name Lazardo Art come from?

There’s an artist illustrator named William Joyce who wrote a book called Dinosaur Bob and the Adventures of the Family Lazardo. It’s one of my kids’ most favorite books. It’s one of my most favorite illustrators. I tried to get my husband to change our last name to Lazardo because then we could be the Family Lazardo. He said no, but it just kind of always stuck in my head. It’s a nod to William Joyce, who I loved and his art for children’s books and the Family Lazardo.