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The Marathoning Mom With Bones Of Glass

Why would you run marathons when you have bones that could break at any time? If you're Jennifer Jansonius, you do it for your daughter.

When you’re running a marathon, what keeps you going, mile after mile?

For Jennifer Jansonius, it’s the knowledge that if she doesn’t run now, and give her daughter a memory of her as a strong and active person, she might miss her shot forever.

After repeatedly suffering several broken bones after the birth of her daughter,  Jansonius, 33, was diagnosed with a hypophosphatasia, a rare metabolic disease that softens the bones due to defective mineralization. Doctors cautioned Jansonius that strenuous activity like running could lead to permanently broken bones.

Jansonius knows she may eventually need a wheelchair, but she wants her now 5-year-old to remember her as strong and active. Running and the community of runners she’s met have also helped Jansonius cope with the stress of her diagnosis and an uncertain future.

Earlier this year, she completed the Boston Marathon, in defiance of both her doctors and–at least initially–the Boston Athletic Association, which organizes the 26-mile race.  Folks talked to Jansonius about running against the odds, rethinking her goals and more.

The following excerpts have been edited for clarity and brevity.

Have you always been into running?

Jennifer Jansonius began breaking bones after the birth of her first daughter.

For the most part I’ve always been into running. I ran a lot with my dad as a little kid. I ran all through high school. I was varsity cross country. I kind of stopped running when I got to my twenties. You get lazy, and then you have a kid, and then you try to lose that baby weight, and that’s about the time I got back into running. And unfortunately, that was also just about the time that I started breaking my breaking my bones.

Tell me about your diagnosis. What was your reaction?

I still don’t have a lot of answers unfortunately, because mine is so incredibly rare. It’s basically a rare form of an already rare condition. I probably will never have any answers. I won’t know if I’m going to pass this along to my child or what the incidence rate is because they can’t even tell me if it’s dominant or recessive. I don’t know about treatment or if there will ever be treatment for me. Unfortunately, I’m going to have to take it day by day.

How do you make peace with that uncertainty?

You can either wallow in it or pick up the pieces and move on. Obviously you’re a lot happier and a lot healthier if you keep moving.

You can either wallow in [uncertainty] or pick up the pieces and move on. Obviously you’re a lot happier and a lot healthier if you keep moving.

After applying and getting rejected for the Boston Marathon, the International Para Olympic Committee got involved on your behalf and you got finally accepted to the Marathon in January.  What was your training like?

Well, it was a bit of an experiment. I had broken my femur again in October and as of the MRI at the end of December, that femur was still healing from an old stress fracture. So unfortunately I found out about a month later than I was supposed to be ready for a full marathon. I went on some medicine to heal my fracture and I trained about eight or nine weeks. I took it slow and easy and essentially had to hope for the best. This was once in a lifetime opportunity. I wasn’t sure that my leg was going to hold up.

What happened at the Marathon?

I actually ended up the day before the marathon in the emergency room with an anaphylactic reaction. So in addition to all the other things that could’ve gone wrong that also went wrong. But in the end I survived and made the six hour cut off and I finished. That was what we were hoping for. It was an experiment in all things you probably should not do, but they won’t allow you to defer and they basically said, “hey look we’re probably not going to allow you in again.” I’m going to try to appeal that decision next year, just see what happens, but at the time as far as I knew they were only going to allow me this one opportunity so I had to take it.

The running community has helped Jennifer deal with the stress of her condition.

What did it feel like when you did finish?

I was lucky enough to have my husband be able to guide me in for the last eight miles so that was nice. More than anything, it was just something I was really hoping I could do for my daughter. She doesn’t quite understand it yet. I’m just really hoping that several years from now when she remembers her mom she’ll remember the things that I did.

Do you plan to run more marathons or other races? What’s next for you?

I don’t know. Basically all of the doctors over the years have told me “you know you really shouldn’t run at all let alone marathons.” Marathons have a really, really high risk of me doing damage that I can’t come back from. I’m able to walk marathons pretty safely, it’s the running of the marathons that have kind of a 50/50 for me. If there’s a chance I might to do Boston or do New York, or maybe do some fundraising then I’ll probably only do the ones that are the once in a lifetime opportunities. Eventually my body’s going to stop allowing me to do these. It’s just a matter of when and how.

Is there anything that you’d like readers to know about your story?

I’m really really hoping that maybe just one person realizes that bad things may happen but it’s not necessarily the end of everything.

When I first was diagnosed, I honestly thought my life was over. I cried, I was just a mess, I went online. That’s the first thing everybody does. I couldn’t find a single story, a single person like me that had a skeletal disorder that was still running. So for me that was really really difficult because at 30 they’re talking about needing a wheelchair. It was really just a lot to comprehend.

I’m really really hoping that maybe just one person realizes that bad things may happen but it’s not necessarily the end of everything. You might have to change your plans a little bit. It may not be exactly what you thought it would be. But there is still that opportunity to do the things you always wanted to do or to realize those dreams, and just not to give up on that. It took me a long time to figure out that I could still accomplish all those things I wanted to, just because there was no one like me out there.

The Good Fight

The Mom With A Mission To Help Families With Down Syndrome

Roughly one in every 700 babies born in the United States has Down Syndrome. This mom is determined to help those children reach their full potential.

In 2002, when Nancy Gianni gave birth to her youngest child GiGi, the medical team treated her like life as she knew it was over. “They put me in a private room and kept sending in the clergy,” Gianni says. “‘Is she dying; is there something more you’re not telling me?’ I asked. No one would look me in the eye anymore.”

GiGi was born with two holes in her heart and Down syndrome; both were a surprise. “It wasn’t until I took her home that I really got to understand her and see that she was so much more than this diagnosis,” Gianni says. “When you have a typical kid, they don’t tell you how they might have a learning disability or they might get cancer, but when you have a kid with Down [syndrome], you only hear the negative.”

Gianni, who lives in Barrington, Illinois, left a job in ad sales when her oldest son was born. After GiGi’s birth, Gianni concocted an idea to challenge people’s perceptions of Down syndrome and give families a place to see their child’s full potential.

Nancy Gianni and her daughter, GiGi.

Gianni envisioned a place where children with Down syndrome could get educational and therapeutic programs tailored to their needs. A place where families with Down syndrome children would feel welcomed. Skeptics suggested she focus on her own child, but Gianni persisted. “I could have put all my energy into her but that’s not going change the world’s perception,” she says. “We needed to change perception for all individuals with Down syndrome.”

In fact, Gianni says the idea had been gestating from the moment GiGi was conceived. Although she did not know her child would have Down syndrome, Gianni found herself taking an early stand during pregnancy when other people used the R-word. “I remember being so excited and feeling like he or she was already making me a better person, making me stand up for people,” she says.

She opened the first location of GiGi’s Playhouse Down Syndrome Achievement Centers in Hoffman Estates, Illinois in 2003 with an all-volunteer staff. Setting up shop wasn’t easy but fortunately Gianni found others who believed in her mission.

Initially, explaining her plan for a center for people with Down syndrome seemed to set off alarm bells for landlords and others. Gianni called her insurance agent and he was out of town, so she spoke to someone else. “I want to open this place for people with special needs and have different programs for them,” she told him. Two seconds later, he said, “I’ve got a 16-year old with Down syndrome; will there be something there for him?” He made sure she got the insurance she needed. 

GiGi’s Playhouse offers families around the country a Down syndrome friendly place for activity and support.

Each year, GiGi’s Playhouse offers 50,000 sessions of completely free programs for people of all ages, whether they have a diagnosis or not. For instance, Language, Music N’ Our Peeps (LMNOP) classes use music and dance to teach infants and families basic sign language.

Melissa Ciraulo, a mother of three living in the suburbs of Chicago, took her three-year-old son Peter to this class. “Since attending LMNOP, he’s using more words, learned to sign more and trying to verbalize,” she says. “Whether it makes to someone else, it makes sense to us. He’s started him to understand what is going to be expected of him in preschool.” She’s also taken her three kids to open play and attended some of the seminars for parents.

School-age kids and teens can participate in cooking, club, karate, drama troupe or literacy training, while young adults in GiGi University complete an eight-week program learning confidence, career skills and wellness. They then go on to intern at GiGi’s Playhouse Store, Hugs + Mugs.  

For GiGi Gianni, “the literacy and speech programs are my favorite, but I love the GiGi Fit workouts and hanging out with my friends.” Fitness programs are especially important for people with Down syndrome since they’re often born with low muscle tone (hypotonia). Because of that, GiGi makes sure to stay in shape by taking dance classes, as well as being a member of her school’s cheerleader squad. 

Nancy Gianni says being an ambassador for GiGi’s Playhouse has given her daughter tremendous self-assurance. On a recent trip to a Playhouse opening in Raleigh, North Carolina, Gianni noticed that GiGi “walks through the airport with such confidence. She just gave a speech [that she’d written] in front of a thousand people.”

GiGi Chianni aims to be a leader and role model, not just to kids with Down syndrome, but to everyone.

GiGi Gianni says of her ambassador role: “I want to be a leader and help people and to inspire people to be better.”

Ciraulo believes GiGi’s Playhouse has had a positive impact on her entire family. “To be able to go somewhere and be surrounded with people who’ve gone through the same things as well as a lot of the same joys, it’s heart-warming and a sense of relief,” she says.

GiGi’s Playhouse now has 31 locations across the United States and Mexico, with hundreds more communities asking for their own Playhouse. Gianni hopes to have one in every major metro market by 2021 and plans to offer some online programming for families outside those areas.

“As soon as we opened that [first] one, we had all these inquiries,” Gianni says. To help GiGi’s scale, Gianni added paid employees and had an operating agreement and licensing agreement created for new locations, which operate as their own individual LLC under the same nonprofit. “They’re responsible for their own fundraising, but we give them all the tools that they need,” Gianni says.

GiGi’s Playhouses are entirely donor-supported. “We don’t use any government or state funding,” Gianni explains. “It’s not dependable. It would be devastating to have to pull programs. You can’t take this away from a family once they have it.”

Gianni says this donor-based model has helped make GiGi’s Playhouse sustainable. “I think we can equate our longevity to that from the beginning,” she says. “I’ve always had to be scrappy.”

Unlike the grave predictions of the medical team that delivered GiGi, Gianni and her daughter have thrived in their roles as chief belief officer and ambassador, respectively. “If you look at my life, it looks pretty good,” Gianni says.