Published: Jun 17, 2019
Most teenage boys enjoy being active, playing sports, and the outdoors. Aidan Sullivan loved these kinds of activities when he was younger, playing football and hockey, and enjoying snowboarding and sailing. But when he sustained a hockey injury at age 10 that led to him being on crutches for 6 months, closely followed by a subsequent snowboarding fall, Aidan was diagnosed with complex regional pain syndrome (CRPS) and suspected of having Ehlers Danlos syndrome (EDS), a condition that his sisters had been diagnosed with.
Ehlers Danlos syndrome is a genetic disorder that affects the connective tissue, leading to many secondary conditions, and CRPS is a nerve condition that when if flares ranks higher on the McGill pain scale than amputation or childbirth, but currently has no clear treatment, no cure, and is not very well understood.
Now fifteen years old, Aidan and his family have been averaging 7-13 weeks per year in hospitals for both he and his sister Michaela, who lives with EDS and a fully fused spine. Treatments for Aidan have included surgeries to fix nerve damage and orthopedic problems, as well as consistent physical therapy that can be very painful, but is necessary. Aidan hasn’t walked in five years due to pain and orthopedic complications.
The Sullivans are from Rhode Island and have sought treatment for Aidan at hospitals in both Boston and Cincinnati, eventually receiving a referral to seek a second opinion at Nemours/Alfred I. duPont Hospital for Children. It was a great match. Aidan loves his doctor here and the different and non-surgical approach that they are taking to his treatment.
They also found another great match at the Ronald McDonald House of Delaware. Aidan, his mother Donna, and his mobility service dog Jack, stayed with us for several weeks earlier this year and found support in a peaceful “home-away-from-home.”
“It’s nice to have people who understand and to meet other moms,” says “Donna, “and to compare notes… and just talk.” She notes that although at first, she didn’t know what to expect, the Ronald McDonald House has been an incredibly peaceful experience.
Aidan’s father passed away in December, and for Donna, this was the first time facing the trip alone. “This is has been such a positive and supportive experience, I cannot thank everybody here enough for their kindness, and hospitality” she says, sharing that having the House makes everything easier and removes stress. “We don’t have to worry about going out to get food and all of the logistics. When we arrived here, we both needed some peace, and the House gave us that.”
Aidan says that for him, the best part of staying at the House is coming back after a long day of physical therapy to all of the “treats” that are always available in the kitchens- cookies, brownies, and baked goods prepared by volunteers.
With the peace the Sullivans have found, they are also looking toward the future. With the help of Jack, Aidan is hoping to walk on crutches soon. He is also a very talented musician, playing guitar as a way to help him through pain and surgeries; he is very much looking forward to working with his band back home to release some new songs in the near future!
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