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2017 Kane County Chronicle Best of the Fox

Helping find treatment: Daniel and Melanie Whiston found Where There’s A Will There’s A Cure

Whistons create Where There’s A Will There’s A Cure foundation

Published: Wednesday, Nov. 9, 2016 11:41 a.m. CDT
Caption
(Sandy Bressner - sbressner@shawmedia.com)
Melanie and Dan Whiston of Geneva, with their children Juliet, 7, and William, 5, started the Where There's a Will There's a Cure Foundation for Myotubular Myopathy.

Daniel and Melanie Whiston have known one another since high school but started a relationship after college. Daniel was a lawyer and Melanie a civil engineer. For a while they lived in trendy Chicago neighborhoods and then settled in Geneva for family life. They are brilliant, driven and strong people, and it’s only natural that they are instilled with the qualities of Everyday Heroes.

Often, heroes aren’t recognized until they are presented with an unusually challenging obstacle. The Whistons had an especially frightening challenge when their second child, William, was born. He is perfectly adorable and cognitively bright like his parents; however, after a journey of testing, doctors and medical procedures, their infant was diagnosed with Myotubular Myopathy (MTM).

MTM results in muscle weakness. Not only are motor skills affected (such as sitting, standing and walking), but people affected often have difficulties breathing and eating. Tragically, there is no cure.

It’s been five years since William was born. Daniel confided: “The numbers are scary. Half [of babies with MTM] don’t make it to their first birthday, and you have to make serious choices and we chose to do as much as we can.”

With an infant and a toddler at home, Daniel and Melanie started Where There’s A Will There’s A Cure in order to raise funds for MTM research and treatment development.

Daniel spoke with hope: “There were no treatments when we started, and we’re now at the doorstep of two clinical trials. And you should know we’re not the only organization out there, but we’re very proud of what we’ve done ... . We’re helping, and by the end of the year clinical trials will be started as a result of our fundraising efforts.”

“It’s going well, and we’re really excited. A lot of what we’ve been working on is coming to fruition now, so it’s rewarding to see where we’re at right now,” Daniel continued. “We’re at the doorstep for the first time ever. This rare form of Muscular Dystrophy will have a treatment. This will lessen the symptoms.”

Fortunately, the Whistons have a lot of help with their foundation and at home. “In regards to our kids, the family helps a lot,” Melanie said, “They enable Juliet to do activities because William can’t always leave the house; he might have a cold or be a little sick. So family has helped a lot in those aspects.”

William uses a wheelchair and a ventilator and cannot speak. Melanie was positive: “His main form of communication is with an assistive technology device. He can point to an iPad and make sentences.”

Both parents find inspiration in their children. Daniel beamed: “William has so many physical challenges, but he’s so strong. Juliet has had to grow up a little faster than we would have liked, but she’s taken on the role of a big sister and we’re really proud. They’re now in the same school, and they’re both really excited.”

Melanie explained: “They’ve put all of his kindergarten friends’ pictures on [his iPad], and he can say thank you to his friends. Cognitively he’s a normal 5-year-old, and he’s in a mainstream class. He loves to read books, and he has all of the interests of a typical 5-year-old.”

The Whistons can’t leave home for date nights, so they’ve found other ways to connect at home. Daniel explained: “I think one of the things we try to do is exotic take out – different kinds of lunches and dinners. You’d be surprised how many places are willing to give you their entrees as take out.”

When it comes to facing a challenge the Whistons demonstrated how to approach it with courage, and that’s what makes them Everyday Heroes.

Daniel advised, “The problem itself seems so daunting, but you have to start somewhere.”

The Whistons lowdown

Who they are: Daniel and Melanie Whiston, founders of Where There’s A Will There’s A Cure

Town: Geneva

Age: 40 (Daniel) and 39 (Melanie)

Family: Parents of Juliet, age 7, and William, age 5, and family with the Myotubular Myopathy family

Hobbies: Reading and watching movies with the kids

Fun fact: Daniel – “I won a regional chili cook-off.” Melanie – “I worked in a coal mine for a summer. Prior to being a stay-at-home mom, I was a civil engineer.”

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