‘Lucky’ Basking Ridge Parent Cites Shortage
Of Options for Children with Multiple Handicaps
Bryan Desatnick with his mother, Edana,
and father, Lloyd, at Miles for Matheny.
When he was 18 months old, Bryan Desatnick began having seizures and was diagnosed with Angelman syndrome, a genetic disorder that causes developmental delays and neurological problems. Today, at age 17, Bryan dances at his school prom, competes in Special Olympics and has dinner out with his friends.
In January 2003, Bryan was admitted as a day student at the Matheny School. A resident of Basking Ridge, he had attended the Mount Prospect School there through the middle of fifth grade when his medical condition and seizures became unmanageable. His mother, Edana Desatnick, recalls that, “he went into significant seizures and didn’t wake up for three weeks. It was not going to be possible for him to continue school in an inclusion environment. Ultimately, the school district decided we should come and visit Matheny. We all came here and loved it. As these medical issues got more complex, there was no doubt in the school district’s mind or in our mind that Matheny was the right place.”
Then, says Desatnick, “we were offered one of the 12 new beds in the yellow zone, a new residential wing at Matheny.” Now a member of Matheny’s Board of Trustees, Desatnick feels, “We happened to have been one of the lucky ones. Our lives and his life are so much better. But there are just not enough options for children who have multiple handicaps.”
Bryan’s health since he’s been at Matheny, she describes as having been “transformational. Every year he’s gotten bigger and stronger. At Matheny, he can be supported, day in and day out because of having things like the seating and mobility clinic and the orthotics clinic. We used to have to travel just to do a wheelchair alignment. Now he has a custom-made wheelchair. He’s comfortable; he can recline; he can eat in it because he has a custom-designed tray. Because of the creativity of the therapists, he’s using a completely different kind of walker than we thought possible. He’s had a variety of orthotics made for him – a completely new spring-based design that goes all the way up his leg. He has a stander that he uses in the classroom. Every little component of what his life was all about has been enhanced because of the talent of the people who are at Matheny.”
An important part of Bryan’s progress, though, has nothing to do with medicine. He has a full social life that his parents could never have imagined. “He was at the Olive Garden recently on a field trip,” Desatnick says, “and I went to pick him up. There were 30 to 40 kids in their wheelchairs sitting at the Olive Garden having lunch. It’s a picture you can’t ever dream of. There’s the Matheny prom. It’s the most magnificent night of the year because you not only see him and all of his friends celebrating, but you see normal kids from the community helping. There’s Miles for Matheny [Matheny’s annual fundraiser and community event] and the Special Olympics. He’s involved in so many things, and each one of them build on each other to create a completely different life than he would have had.”
But the lifestyle Bryan is able to lead at Matheny, Desatnick emphasizes, “is only possible because of the outstanding medical care he receives on a daily basis. Matheny is licensed as a special hospital, and the doctors, nurses, teachers, therapists and aides are all specially trained to treat children and adults with developmental disabilities – they are like angels who understand Bryan’s challenges, medical complexities and his wonderful possibilities. We are grateful to have Matheny in our lives.”