by Susan Oâ€™Neill
BIG ROCKâ€”The majority of wishes Make-A-Wish grants are for travel, with half of these to Disney World. But when the foundation contacted the McCannon family, they decided a therapy pool would do their granddaughter the most good, and it could help others like her in the future.
Kasey Morgan McCannon was born with was originally thought to be developmental disabilities. Her grandparents, Ted and Susan McCannon, have raised her since she was a baby at their home in rural Big Rock.
Last year, however, Kasey was diagnosed with Sanfilippo Syndrome, a rare genetic disorder causing mental and physical deterioration and behavioral problems. She became nonverbal and screamed for days at a time, a symptom not uncommon with the disorder. She lost her ability to sleep, and at one point, Kasey was awake for eight days straight.
She stopped eating and the doctors surgically implanted a feeding tube to keep her alive. She was at Rush Presbyterian Hospital in Chicago for 37 days, and by that time, the McCannons were unable to care for her needs.
Kasey was 15 years old at the time. She moved into Alden Village in Bloomingdale, Ill., in June, an intermediate-care facility for developmentally disabled adolescents. She would come home on weekends to spend time with her family.
Although she did not seem to be improving, in September her family decided to bring her home. Eventually, her grandmother was able to get her to eat, and she started back at school. The thing that really seemed to make her happy was the therapy pool at the Vaughan Athletic Center in Aurora.
Kasey started swimming when she was 18 months old. Mary Schutte, a swimming instructor with the Fox Valley Special Recreation program, had worked with her for nearly seven years. Three years ago, however, she simply stopped going into the pool.
Last fall, the family took her back to the Vaughan Center pool. When she entered the water, she began to smile and play. She has begun walking again and she is talking.
â€œItâ€™s just amazing how children react to these things,â€ Ted said. â€œItâ€™s made a big difference.â€
So when the Make-A-Wish people called the McCannons to see what Kasey might want, the decision was easy.
Through Farm Friendsâ€”a nonprofit organization the McCannons created to raise money for housing for developmentally disabled adultsâ€”the Make-A-Wish Foundation and Endless Pools, a pool company in Pennsylvania, the McCannons received an oversized pool complete with hydrotherapy jets.
Set up in May, the pool will eventually become just part of the McCannonsâ€™ dream of providing housing for developmentally disabled adults on their property. In the meantime, they plan to allow other children with disabilities to use the pool for their therapy.
There is no cure for Sanfilippo Syndrome and the average life expectancy for children with the disorder is between 14 and 20 years. But for now, Kasey is prospering and progressing, something that is not supposed to happen with Sanfilippo Syndrome.
â€œIt (the pool) has made one little girl very happy,â€ Ted said.
For more information about
Sanfilippo Syndrome, visit the website at www.mpssociety.org
For more information about Farm Friends, visit the website at
Photo: Fox Valley Special Recreation program swimming instructor Mary Schutte works with Kasey Morgan McCannon in Kaseyâ€™s therapy pool at her grandfather Ted McCannonâ€™s home. Photo by Susan Oâ€™Neill