Madison Family Adjusting to Daughter’s Rare Chromosomal Disorder
(WHNT) – Adelaide Grant is 27 months old. She was diagnosed with Prader-Willi Syndrome three days after she was born. The diagnosis was confirmed at two weeks.
The learning curve on Prader-Willi is steep. Adelaide’s parents, Penni and Kevin Grant “Googled” it. That was a mistake.
“We didn’t read anything good about it” said Penni.
Prader-Willi Syndrome is a chromosomal disorder. On the minor end, clinical findings show those with Prader-Willi may battle sleep apnea and behavioral problems that range from temper tantrums to obsessive/compulsive behavior.
The major clinical findings range from developmental delays to obesity brought on by hunger.
Adelaide’s father Kevin says it’s not the hunger you think of when your lunch runs late.
“The hungriest you’ve ever felt in your life — she feels like that all the time. There is no satisfying her hunger,” said Kevin.
Adelaide’s hunger, for the most part, is in check now. The early diagnosis was a huge break for Penni, Kevin, and Adelaide. Adelaide’s treatment was heavy on growth hormones. But the learning curve for Prader-Willi had some rough and scary moments.
Penni said sometimes Prader-Willi dumbfounded the medical people.
“The neonatologist brought out a medical encyclopedia and it had a page of what Prader-Willi was about. He said ‘the only thing I know about it is you have to lock up your refrigerator.’ And you’re like… what?” said Penni.
Some adults with Prader-Willi, in extreme cases, eat themselves to death.
Adelaide’s hunger is in check, for now. The Grants travel to a world-renowned Prader-Willi specialist in Gainesville, Florida. Penni and Kevin are hopeful about the future. Penni says there is plenty of light at the end of the tunnel.
“Once you start talking to specialist and researchers you realize there is hope,” Penni said.
Managing a healthy lifestyle is a constant battle for the parents of a Prader-Willi child. Kevin says they watch everything Adelaide eats.
“We feed her very healthy foods. We tell her teachers at daycare when they have Halloween parties, Christmas parties — no cupcakes, no cake. Right now she [Adelaide] is fine with it… but we’re just preparing for the future,“ Kevin said.
It’s not day by day for Adelaide and her parents. It’s meal to meal and hour to hour. Penni and Kevin fight the good fight the way those with special insight into what love and care can do to build a family.
“She’s awesome. She’s such a good girl,” said Kevin.
If you would like to help families that are dealing with Prader-Willi, there is an event Sunday, September 29. It’s Dublin Park in Madison and begins at 2:00 p.m. It’s called “One Small Step” and little Adelaide and her family would love to see you there.
Dublin Park is located at 8324 Madison Pike, Madison, AL 35758.