A rural Stafford County boy and his family get a new Mickey Mouse playhouse from Make-A-Wish Kansas, a spark of hope in the life of a 4-year-old afflicted with a rare brain disease.
With his tiny hands clenched tight and his eyes closed, 4-year-old Jace Baker didn't look very happy Saturday when more than 40 Make-A-Wish volunteers, family and friends came to his rural Turon/Stafford County home to put up a special Mickey Mouse play-set. But considering that noise, light and strange people cause him anxiety and that he can't walk, run or play like other children his age, his mother Cassandra Verstraete said Jace would get a lot of enjoyment out of the new addition once things quieted down.
Born with a genetic deficiency called Aromatic L-Amino Acid Decarboxylase Deficiency (AADC) - a very rare, genetically-inherited disease, Jace is one of only 130 people worldwide who have been diagnosed with the disease that makes it difficult for him to function.
"We knew something was wrong when he was about 4 months old," Verstraete said. "He started just screaming and we couldn't figure out what was wrong."
It took months and years for Verstraete and her supportive network of family and friends to finally get a diagnosis for her son’s problems that made sense.
"It seemed like he was always in pain," Verstraete said. "From about seven months old he has kept his hands clenched. We've learned to distinguish what his different levels of cries mean."
In the past four years, the young boy's family has taken him to specialist after specialist, and endured spinal taps, blood tests, EKGs, MRIs and a barrage of inquisitions with him. At first doctors thought he had Downs syndrome, then cerebral palsy, some just didn't know what to think, Verstraete said.
"Dr. Donnenwerth at Pratt was just the best," she said. "He was there for us, no matter what. He never gave up and he found a neurologist in Kansas City who could help us."
In Kansas City, Verstraete met Drs. Kaufman and Rosin and found out what was afflicting her little boy.
“This doctor knew right away what it was," she said. "It's called AADC and it means that he lacks certain chemicals in his brain."
The rare brain disease affects the way signals are passed between certain cells in the nervous system and impacts every aspect of Jace's life including mobility and development - similar to Parkinson's. For some children it is fatal. Many do not live past five years.
Verstraete has a calendar featuring photos of children afflicted with AADC. Many of them are siblings, because it is a genetic disease. Some have died. Others however, and Jace's family hopes he is one of those, have found hope in the form of a new gene therapy that has just been approved in trial in California. It calls for a special surgery that would implant stem cells into the brain. There are qualifications however, one of those being that the patient must be at least five-years-old.
"Our goal is to get through this one little piece at a time," said Jace's grandmother, Janelle Verstraete. "We have good people trying to help us and if we can spread what we know to others, more help will come."
Jace is taken, twice a week to Stafford County Schools where he gets physical therapy and stimulation. But more help, and hope, came recently in the form of Mickey Mouse and a new playhouse for Jace. At the urging of their Kansas City team of doctors, an application was submitted to Make-A-Wish Foundation Kansas and to the delight of Jace's family, they were chosen recipients of a grand prize.
"We could have gone to Disney World or something like that," Cassandra Verstraete said. "But we knew he wouldn't be able to enjoy that at all so we picked something that he could have right here at his house, to play with for a long, long time."
Jace's father, Michael Baker, dressed up in a Mickey Mouse costume for the occasion, and as the bright red walls of the new playhouse went up on Saturday, excitement of the children in attendance, all cousins and friends of Jace's grew. The new structure includes a special five-point swing that Jace can be strapped into, something he has never been able to experience before.
"I think he will really like it," Verstraete said. "We took him on a boat once and lapping of the waves calmed him and put him to sleep. I think this swing will be like that for him."
When Make-A-Wish volunteers put the final touches on the new playhouse and it was time for pictures, Jace was brought out in his wheelchair to see the results. There were still cries and his hands were still clenched. After all, it is not easy being trapped inside your own body. But those who knew him best could see a smile. Inside that little body is a boy who wants to play, and inside the hearts of all those who were on hand to see his Make-A-Wish dream come true is hope that someday, little by little, Jace's life and the lives of the people who love him, will get easier.
Make-A-Wish Kansas made that happen just a little last Saturday near Turon on a rural yard in Stafford County. And everyone there to see it was thankful.