Cook Children’s Employee Awarded Trip of a Lifetime to Disney World
By Ashley Antle
Cook Children’s employee Danny Peltier, his wife, Sarah, and their two children are preparing for a big adventure. In November, the family will travel to Walt Disney World with Kidd’s Kids, a nonprofit organization founded by late radio host sensation Kidd Kraddick and dedicated to creating special memories for families with life-altering or life-threatening conditions.
Danny and both of his children live with a condition called Hereditary Spastic Paraplegia (HSP), an inherited neurological disorder that causes weakness and stiffness in the legs. The Peltiers were nominated for the trip by a parent of one of Sarah’s students.
“I've been listening to the radio show my whole life and I know they get thousands and thousands of applications a year and I didn't expect anything to come out of it,” said Sarah, a 6th grade math teacher in Birdville Independent School District. “We were all very surprised whenever we walked into the Cook Children’s Child Life Zone a few weeks ago and were told we had been chosen.”
The Peltiers learned they would join a host of other families on the trip during a surprise announcement in August at Cook Children’s Medical Center where Danny is an employee and several Cook Children’s clinicians serve as medical volunteers for the annual Kidd’s Kids adventure.
Danny has never been afraid of adventure, even with a condition that impacts his gait, balance and ability to walk unencumbered. In his spare time, you’ll find Danny wheeling around a sports field or court, adapting the game so that he and others in wheelchairs can challenge their physical skill and exercise their competitive spirits. He is a long-time competitor with RISE Adaptive Sports.
Adapting to his circumstances and rising to challenges is something Danny has done since childhood.
“I've always adapted my situation to work best for me,” Danny said. “I didn’t have a wheelchair growing up, but all through elementary school, everything that we did, I just kind of made it work. We bent the rules to make it fair for me to be able to play. Then, in college, I got a wheelchair. Seeing how much easier it was for me to get around and move on campus in a wheelchair opened up my eyes to how my life was going to be completely different."
Danny joined other wheelchair-bound classmates and began playing all types of sports, including basketball and football. Together they identified ways to adapt a number of different games for the disabled community.
Family History Unlocks Mystery
As a kid, Danny, his family and his doctors believed he had cerebral palsy. There was no reason to question the diagnosis. It made sense given his symptoms.
Then came the birth of his daughter, Evelyn, now 10. When Evelyn began to walk, Danny and Sarah noticed she had a similar gait as Danny when he was a child. But cerebral palsy is not hereditary, which raised some red flags and led the Peltiers to ask a lot of questions.
Was it possible that Danny was misdiagnosed all those years ago? Could his condition actually be genetic? The family wasn’t aware of any relatives with a hereditary condition like Danny’s. Until the birth of Evelyn, there was no indication of a familial link.
The Peltiers had Evelyn undergo genetic testing to try to pinpoint a diagnosis, something that wasn’t readily available to Danny when he was a child. The results unlocked a generational mystery.
Evelyn had HSP, and given HSP’s link to genetics, that meant Danny likely had it, too — a theory that genetic testing on Danny ultimately proved.
There are various forms of HSP, with varying degrees of symptoms and complications. Danny and Evelyn have spastic paraplegia 3A.
“Whenever we got our daughter diagnosed, they had only identified maybe two dozen variations of HSP, and now there's probably another dozen or two that they've identified,” Sarah explained. “Genetic wise, they've been able to identify the genes causing the condition, and the variations can range from like our family where it's pretty mildly affecting the lower limbs to full body involvement affecting intellect and speech, upper body control and a whole bunch of cognitive function. Some are progressive, some are not. Fortunately, 3A is not very progressive.”
After the diagnosis discovery, Danny wanted to dig deeper into his family history knowing there had to be others in his genetic line with the condition. Danny completed an ancestry kit, unlocking even more of the mystery.
“We were able to track down other family members that we didn’t know of that actually had the same diagnosis,” he said.
An Empathetic Example
While it was surprising, the revelation of Danny’s diagnosis didn’t change his response to his circumstances. He did what he always does — adapted.
Sarah had to adapt in her own way, too.
“Accepting that the future looks different for your children than you thought it would is definitely a grieving process,” she said. “I had to allow myself the space and time to do that. But for me it was just really important that that was away from the kids. My closet floor saw plenty of tears, but in front of the kids, we were really excited about trying out this new doctor's office, or we tried to make everything as fun as we could because we knew that this was their new reality, and we didn't want them to ever feel like this was any sort of negative experience for them.”
Now, they’re both teaching Evelyn and their 6-year-old son, William, who also was born with HSP, to do the same. The family water skis with RISE Adaptive Sports and Evelyn is a national gold and silver medal-winning swimmer who has competed against Paralymic-bound athletes. William plays baseball and will soon begin playing wheelchair basketball.
Danny’s challenges give him unique on-the-job insight for the Cook Children’s patients and families he encounters daily, too. As the practice manager for Cook Children’s Outpatient Psychiatry, Danny is a real-life model of resilience for patients struggling with their own challenges.
He often uses his wheelchair as a starting point for connecting through conversation.
“I try to bring kids out of their shell a little bit and show them what they can do in a chair and let them ask questions,” he said. “We’re always inviting anybody we see in a chair to come play sports with us and telling them how to get involved in adaptive sports. Just letting people know that it’s not the end of the world to be in a wheelchair or have a disability. There’s still a lot of options and things that you can do.”
No doubt, the entire family will be as much of an inspiration to those they encounter at Walt Disney World in November as they are to those at home.