Family holds out hope for a cure for a rare genetic disorder

TODAY'S TMJ4 News Team

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Family holds out hope for a cure for a rare genetic disorder

By TODAY'S TMJ4 News Team. CREATED Apr 9, 2014

GENEVA, Illinois - Two and a half year old Will Whiston is a happy, smart little boy.  However, he lives a life of tubes and respiratory machines because he has major medical issues.

"We've had days its just a struggle to keep him healthy," his mom Melanie says.

Will was born with Myotubular Myopathy or MTM, a rare genetic muscular disorder.

Will's dad Dan explains, "The muscle weakness affects breathing, so any type of cold or flu could be fatal, so it's the continual watching over him."

The Whiston's do their best.  Melanie, an engineer, had to quit her job to stay home with Will.  "Some days are tougher than others," she admits.

Even simple tasks need to be done with the utmost care.

"Just to get William into a car, a ventilator into a car, take a trip.. takes about an hour to get ready, and an hour when they get back to clean the equipment," Dan explains.

The family lives in northern Illinois, but they're working with Dr. Mike Lawlor and his team at the Medical College of Wisconsin, to find a cure for this mysterious disease.

"The results that we've seen in these trials have been nothing short of incredible, so I think this could be a real game changer," Dr. Lawlor says.

Part of the trials involves treating dogs with the same disease.  Doctors are seeing some success, which is both promising and scary.

"It's taxing in some ways to be close.  I have nightmares about not getting it done in time.  There are pictures of these kids on my wall.  I see them all the time," Dr. Lawlor explains.
 
Will is fighting to be independent.  He's learning to use a new power wheelchair.  The Whiston's are hopeful he can eventually lead a life free of tubes and machines.

"I kinda have a dream of him being able to live independently," Dan exclaims.
 
They're thankful for everything Will has taught them.  Melanie adds, "I think the experience of having a child with a disability... you learn to appreciate life in a way you didn't before." 

The Whiston's and their family and friends have started a fundraising website called 'Where There's A Will There's A Cure'.   They've already raised more than $100,000 MTM research.