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Hoping for a cure

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Posted: Wednesday, January 18, 2012 11:09 am

If Balin Hewson could have one wish it would be to find a cure for muscular dystrophy.

It's the one thing standing between him and running, jumping, hiking, or playing baseball or football.

Balin has a form of muscular dystrophy called Duchenne Muscular Dystrophy (DMD). His body does not produce dystrophin, a protein that helps keep muscle cells intact. Where someone without the disease can exercise and their muscles tear and rebuild, his muscles do not rebuild.

DMD is a genetic disease, primarily affecting boys, and is passed through the mother. Women may carry DMD, but have no symptoms. The average life expectancy for someone with DMD is about 30 years. Balin is 10 and, so far, he can still walk short distances on his own with leg braces to keep his feet flat, but it's unclear how long he can keep his strength.

Balin was diagnosed when he was 2. His mother, Brandy, had two brothers with muscular dystrophy who passed away in their early 20s, so she was tested while pregnant to see if she carried the disease. She was told there was a 50/50 chance that she would pass it on and because she was having a boy, doctors recommended an abortion.

"I said, no," Brandy said. "That's not fair. I'm not God. If this is what we end up with this is what we do, we give him all our love."

When the Hewsons received the positive diagnosis they decided to have no more kids. Brandy said she knew Balin would need all her love.

"I was devastated," Brandy said. "I think it hit my husband a little harder because I grew up with it. But this is what we were going to do. I wouldn't give him back for anything. I wouldn't change it. I'd give my right arm for a cure, or my left arm, or my legs. We kind of decided then that we weren't going to dwell on it, we were just going to take it day to day. We decided to give him the fullest life that we can. I have a quote from Abraham Lincoln that says, ‘It's not the years in your life but the life in your years.' We know his life is going to be short so we just want to make every day full as much as we can."

Because of his parent's positive outlook, Balin has become positive as well. The family is volunteering in every way they can for the Muscular Dystrophy Association, and taking small steps to educate those around them about the disease. Each year, Balin invites MDA to his school and they host an assembly to teach kids in his grade about DMD.

"Kids don't understand that I have to wear braces," Balin said. "They don't understand that I have to put them on. They think that you don't need braces if you can walk, but you do. They also don't understand that I'm not able to run like they are. I can't explain that either. I'll say that I can't run because my leg braces are heavy and they say, ‘Why don't you take them off?' I can't do that."

This year, Balin has been asked to be the Fill the Boot Ambassador for Arizona. Arizona firefighters volunteer their time to stand outside grocery stores and ask shoppers to fill their boots with monetary donations.

Once the boots are filled they donate all the funds to MDA. Balin's job is to join the firefighters in asking for donations, or to deliver cookies to fire stations and thank them for their help. The funds go to supporting MDA programs like their clinic, support groups, or Balin's favorite - summer camp. Funds also go toward research, the one thing that could give Balin a better chance at a long life.

Brandy said if there's anything she wants people to know it's just that the disease is out there and for her, it helps to just take it day by day.

"I just am thankful that I have him," Brandy said. "We have a great family support system and I just try not to dwell on it. Some days are harder than others, and I just can't let my mind go there. It gets tough sometimes inside, and very emotional, but you just do it. You put on your game face and just make it through. It's just what you've got to do. I think every day, tomorrow there could be a cure. Something could happen. You can't live your life on hope, but at least it can be there and it does help."

• Contact writer: (480) 898-7914 or ahurtado@ahwatukee.com

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