Ryan has a chromosomal disorder so rare that only 50 other children in the world are known to have it.  The disorder doesn’t even have a name — just a technical description of a chromosomal deletion. 

Because of his disorder, Ryan is the size of a typical 8-year-old.  He has cerebral palsy, hearing and vision loss, and a shunt in his head.  He relies on a feeding tube to eat, is unable to walk, and has the mental capabilities of a 4-year-old.

“When he was born, we could tell that something was different about him,” explains his mother, Peggy.  “We kept going in for blood tests to determine what was going on, but they kept coming back inconclusive.  Finally, at 6 months, he was diagnosed with this disorder.”

Peggy remembers an overwhelming time for her and her husband, Rick.  “You think, ‘Where do I start? What is the future for Ryan?’” she recalls.  “I was 23 when he was born.  We didn’t have any friends who had children with disabilities, and we certainly didn’t know anyone with anything remotely like what Ryan has.”

At 14 months, Ryan was diagnosed with cancer.  “He weighed 14 pounds, and surgeons removed a 2-pound tumor and one of his kidneys,” recalls Peggy.  After six months of treatment, Ryan was cancer-free.

He began coming to Gillette Children’s Specialty Healthcare seven years ago.  Today, he sees several Gillette specialists.  “I can say only fantastic things about Gillette,” says Peggy.  “Everyone stops what they’re doing to see you.  They get you in, they work with you, and then they remember you the next time you come through the doors, and they do it all again.”  Ryan has had more than 40 surgeries, including a shunt placement; work on his ears, nose and throat; feeding-tube insertions; hernia surgeries; and the complete reconstruction of his ankles. 

Today, Ryan is one of the oldest people known to be living with the disorder.  But he is fighting an unknown, life-threatening disease that’s attacking his remaining kidney.  “His kidney is filling with cysts that are multiplying at an alarming rate,” his mother explains.  “Doctors believe he will need a transplant, but they are unsure of when and are unsure if he is a transplant candidate.” 

Despite all he’s been through, Ryan continues to be upbeat.  He enjoys collecting  Thomas the Tank Engine pieces, reading and looking at eBay.  “Our hope is that Ryan can continue to be happy for the rest of his life, however long that may be,” says Peggy. 

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