'Re-Prom' Celebrates Hope For Those With Huntington's
Disease Has No Known Cure And Just One FDA-Approved Treatment
About 30,000 people in the United States live and will die with Huntington's disease.
Huntington's is what health care providers sometimes referred to as a "slow" disease: It steals motor function, the ability to eat, and eventually, the ability to speak. It's genetic, it has no cure, and there is currently only one FDA-approved treatment.
Not exactly the ingredients for a wonderful celebration. But, don't tell that to the Martin family.
As its name implies, "Re-Prom" fashions itself as a trip back in time, specifically one that allows a chance at a high school prom.
"I can't even tell you what tonight means to me," said Shana Martin, about the event.
It's easy to forgive Shana Martin for not being able to put into words her feelings about Re-Prom.
After all, she has just seen a specially-equipped bus take her mother and father on their first real date since 2005.
Shana's mother, Debby, was diagnosed with Huntington's when Shana was just 5 years old.
"Every day, I came home from school, I had to help her go to the bathroom, eat her dinner," said Shana Martin.
The arrival of Debby is a victory for Shana, who has watched her mother live life on borrowed time for most of her life.
Greeting her parents, Shana could not contain her joy.
"Hi Mommy! Oh my God! You look beautiful, Mommy," said Shana. "Are you sleeping? You've got jewelry on and Daddy pinned this on you, you look beautiful. We're going to have such a fun night tonight," she continued.
As he greets his bride, whose side he has never left, Debby's husband George remembers the last time he heard her speak.
"Over at least 10 years ago, now," said George, adding, "I know she's going to love getting out tonight."
The night was also a chance to remember the past: "At least twice a week I'd come get her after work, and we'd go to the mall and look in the stores," said George, of his earlier days with Debby. "She loved to shop."
The night was also a chance to contemplate the future: "I have a 50 percent chance of also having Huntington's Disease," said Shana, adding defiantly, "Just because I have this in my life doesn't mean that should be the reason I should live each day to the fullest. I think every single person should, and tonight's a perfect example of it."
There is a genetic test available for Huntington's, but Shana has chosen not to find out if she has the trait.
Shana is familiar to many in the Madison area as she is a popular local trainer and a world champion athlete. ESPN viewers may have seen her living life to the fullest while competing in the Stihl Timber Sports series.
The total from the weekend's fundraiser hasn't been announced yet, but the first of its kind raised roughly $40,000.
But the success of the evening can't be completely measured in dollars.
The hard times that the Martin family has been through and continues to go through are why Re-Prom is about reliving thrilling times, recognizing how quickly life can change, and ignoring what might come next in favor of enjoying what?s happening now.
For more information on Huntington's Disease or to make a donation, visit this website.
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