Wal-Mart holds party for siblings with rare disease
JACKSONVILLE, Fla. – Can you imagine not being able to taste your food? That's just one of the small side effects from Familial dysautonomia, also known as Riley-Day syndrome.
Meet 20-year-old Jordan and his 19-year-old twin sisters Samantha and Maxine. They all have a rare genetic disease that affects some Jewish people. Their mother, Sondra Mallow, says she just hopes they live to 30.
"You know, what can you ask for?" Mallow said. "You want your child to be happy. I hope that they're happy for whatever time they have on this earth."
Because of their disease, they don't have taste buds, their bodies cannot hold water, nor does their body regulate their body temperature or blood pressure. The disease prevents them from feeling pain.
All three have epilepsy. Eventually their bodies give out.
"It's not a forgiving disease," Mallow said. "When you get sick, if you make one little mistake you lose your child."
When Wal-Mart heard about the siblings, it wanted to do something special for them.
Wal-Mart Heart, a volunteer program created by the Wal-Mart truck drivers, decided to throw a party for these special siblings. They gave them gifts, made them honorary truck drivers for the day, and then paraded them around in the trucks in the parking lot.
"They're having a great time," a truck driver named Glenn said. "It's very important to us that they laugh and have a great time and enjoy their life."
Community agencies came out to support them, including the Jacksonville Fire and Rescue Department, Florida Highway Patrol, the U.S. Army, the Marines, the National Guard, Jacksonville Sharks dancers and mascot Chum, the Jacksonville Sheriff's Office K9 Unit and many more.
"It's all about the kids," Glenn said. "That's the reason we enjoy doing these events."
There are less than 350 cases of Familial dysautonomia known worldwide. To learn more about the rare disease, click here.
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