You have to be very special to walk the runway at the Jamie's Dream Team fashion show: Only kids with severe illnesses strut their stuff down this catwalk.
For Addison Johnson's four children, the event was a chance to be the center of attention — not for how sick they were, but for how nice they looked.
“It’s heartbreaking, in one sense, that they are involved,” Johnson, a 35-year-old stay-at-home mom, told TODAY.com. “It’s the last thing you ever want a child to be part of. But in another sense it’s an awesome thing.”
The show was put on in May by Jamie's Dream Team, a Pennsylvania-based nonprofit dedicated to lifting the spirits of the handicapped, disabled, terminally ill, severely injured or those suffering from serious medical conditions or trauma. The group regularly grants wishes for very sick kids, such as a princess party for a 5-year-old with cancer.
All four of Johnson’s kids suffer from a rare, incurable and deadly inherited disease called ataxia telangiectasia (A-T) that affects the nervous system, immune system and other parts of the body. It strikes about 1 in every 40,000 children in the United States and 1 out of 100,000 worldwide, according to the National Institutes of Health.
As children with A-T get older, they have a harder and harder time coordinating movements. They often have problems with balance and hand coordination, as well as involuntary jerking movements, muscle twitching and issues with nerve conduction. Typically, children with A-T will be in wheelchairs by the time they reach their teens. Most who get the disease die by the time they are in their 20s.
Johnson first suspected something was wrong when her first child, Ayden, started walking, because he looked wobbly and somewhat uncoordinated. But the family’s physician thought it was something the boy would grow out of. He didn’t.
So Johnson and her husband, Ryan, took Ayden to specialists. At one point A-T was suggested as a possible diagnosis, but the family says doctors told them this was not the problem, and that their son would be fine.
Had Ayden been diagnosed at that point, the Johnsons would have known that they were both carriers of the gene that causes A-T. As it is an autosomal recessive disorder, you have to inherit a copy from both parents to develop symptoms.
But the Johnsons didn't know this at the time they decided to give their son a sibling. It was after Addison got pregnant again that the couple was told that little Ayden, indeed, had A-T.
“We were out of our minds,” Addison remembers. “I cried for two weeks straight upstairs in his room. I’d just hold onto his favorite Teddy bear and just cry. I kept thinking, oh my God, he’s never going to get married and have children. He’s never going to go to college. Then one day he asked my husband, ‘Why is mommy crying all the time?’ I guess we stopped thinking about it at that point.”
When the Johnsons went in for an ultrasound and amniocentesis, they got a big surprise: Addison was carrying triplets. The Johnsons’ three daughters, Alivia, Riley and Payton, were born 9 weeks early, but did fine. “We waited till they were 8 months old to get them tested,” Addison says. “The results came back on our wedding anniversary: all three girls had A-T as well. It was very, very hard.”
Making matters worse, A-T also increases the risk of developing lymphoma and leukemia because it weakens the immune system. And in April of 2014, Alivia developed lymphoma. She underwent chemotherapy is now in remission.
The Johnsons said these days, they try to take things on a day-to-day basis. Occasions like the fashion show allow everyone to take a day off from disease. “We realized what we have to do now is to treat our kids like we would have if they had not been diagnosed,” Addison says.
As she watched her children get all dolled up for their runway walk this year, she could only smile.
“To see the looks on their faces, and to see how much they loved it, we were really excited for them,” she says. “They were getting to take the time out and just be themselves."
The children, who dressed in costumes ranging from Hawaiian-themed to "Frozen"-inspired, were excited for weeks. Ayden even told his classmates that he’d learned how to sashay down the catwalk. “It really did make them feel special,” his mom remembers.
Another big advantage to group events like the fashion show is they give families of sick children a chance to connect, says Carol May, manager of the supportive care team at the Children’s Hospital of Pittsburgh.
“These types of activities allow parents to meet the other parents of children who are ill,” May told TODAY.com, adding that the event can function like an impromptu support group. “It allows the parents to build relationships with someone in a similar situation.”
It’s also a break from dealing with the everyday stresses of the illness.
“It’s a day you can forget about it all,” May says. “I think when you have a child who is terminally ill, every day you’re waiting for the other shoe to drop: bad lab results, a medication that doesn’t work anymore, a procedure that doesn’t help. These kinds of events allow them to forget about the illness that consumes their lives.”
Jamie Holmes, the woman who started Jamie’s Dream Team, was immediately taken by the Johnson family when she met them.
“I was just in awe," she says. "I wanted to give them everything. They are so nice and kindhearted.”
Even with their own problems, the Johnsons “want to help other people,” Holmes says. “Anything we do I invite them to. I feel bad for them, but I don’t pity them. They are so optimistic. They’re just a good family.”
Linda Carroll is a regular contributor to NBCNews.com and TODAY.com. She is co-author of "The Concussion Crisis: Anatomy of a Silent Epidemic” and the recently released “Duel for the Crown: Affirmed, Alydar, and Racing’s Greatest Rivalry.”