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Bloomfield youngster battling rare form of Muscular Dystrophy: seeking support for Muscle Walk

3.0 from 5 votes
Thursday, January 27, 2011

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Bloomfield resident Jude Myers is a typical 4-year-old boy in so many ways.

He loves to play with his Hot Wheels racer toys.

Jude enjoys music and likes to sing.

Sponge Bob is among his favorite cartoon characters.

He delights in motoring his big battery-operated John Deere ride-along tractor around the yard.

Jude is called a "happy little boy" who loves to kiss and hug his mother, Amber Myers.

But Amber knows her only son is different from most youngsters his age.

Jude has a rare genetic disease called Duchenne Muscular Dystrophy (DMD) that involves rapidly worsening muscle weakness.

Jude is not exhibiting many outward, visible signs of this disease, but the early prognosis given to the parents is not encouraging.

"He looks like a normal 4-year-old. He can't run and jump like a normal 4-year-old. He does have a speech problem. He's never been able to talk very good," Amber says.

Jude was first diagnosed with DMD just before Christmas.

"We actually came across it by accident. He was having problems with his stomach and we took him to the doctor and they did some blood work on him. His liver enzymes came back high. We went back every two weeks to get some more blood work to see if it would go down and it was still high. We did that three times and they still couldn't figure anything out," his mother told the Greene County Daily World. "I told them (the doctor) to send him to Riley (Children's Hospital in Indianapolis). I wanted to know what was going on with him."

Jude saw a gastro-intestinal (GI) specialist at Riley Hospital and one of the tests they did on him checked the enzymes in his muscles. Testing by a neurologist then confirmed the diagnosis.

News of the diagnosis was called "very shocking" to the young parents.

The prognosis is anything but encouraging.

By age 10, many patients need braces for walking.

By age 15, most patients are confined to a wheelchair.

Death usually occurs by age 25, typically from lung disorders.

"We only know of three so far in Indiana that has the Duchenne Muscular Dystrophy. It's 1 in every 4,000 kids that is affected by it," Amber explained. "There is not any history in our family at all with it that we know of. He doesn't really show a lot of signs yet. They (the doctors) said it will be a couple of years before we really notice a big change in him.

"It's the worst kind of muscular dystrophy that you can have."

That's scary to his mother and his dad, Troy Myers.

"It affects their heart and lungs. He has to go for regular check-ups for that and we have to keep his muscles strong as long as they can," Amber said. "It's pretty crazy for something like this to happen. He's our baby. To know that he is going to have something wrong with him for the rest of his life is heart-breaking. Right now, from what I read, the life expectancy for someone with this is 25. There are known cases where they live longer. I think it depends on how well you take care of yourself."

The family remains strong in its faith.

"We are just devastated. I know everything happens for a reason. Everything is going by so fast and it seems like a really bad dream. But we have tons of faith and we know God will be watching over us and our baby Jude," Amber states. "Jude will be our only child. We were told we shouldn't have anymore children because there is a 50/50 chance the child will have this disease if it is a boy and 50/50 chance if a girl to be a carrier. We are going to devote all our time to our son and enjoy his loving self. He is our whole world and always will be."

For now, Jude is making regular trips to Southern Indiana Pediatrics in Bloomington where he is treated by Dr. Aline Hamheia and undergoes regular physical therapy sessions to keep his muscles invigorated

His mother Amber (Rush) Myers, a 1998 White River Valley graduate, hails from Worthington. Jude's father, Troy is from Linton and works at Northside Machine Company in Dugger.

The couple does have health insurance, but is trying to get aid through disability Medicaid.

"It (the ongoing treatment) is going to be real costly," Amber points out.

The couple is also trying to do what they can to raise research money to find some medical help and answers for this horrible disease.

They've signed up for the first annual MDA Central Indiana Muscle Run on March 26 at the Carmel High School Fieldhouse.

Jude has a team and his family is trying to raise donations.

That's the family's biggest hope right now.

"I want to do whatever I can to raise money to help to donate to them (the Muscular Dystrophy Association) to help find a cure or anything to help my son or all of the kids as far as that goes."

To help with Jude's fundraising effort go to https://www.joinmda.org/indymusclewalk2011/TeamJude and sign up.

Duchenne Muscular Dystrophy: What is it?

Duchenne Muscular Dystrophy is an inherited disorder that involves rapidly worsening muscle weakness, according to the American Accreditation HealthCare Commission.

Duchenne Muscular Dystrophy is caused by a defective gene for dystrophin -- a protein in the muscles. However, it often occurs in people without a known family history of the condition.

Because of the way the disease is inherited, males are more likely to develop symptoms than are women.

The sons of females who are carriers of the disease (women with a defective gene but no symptoms themselves) each have a 50 percent chance of having the disease. The daughters each have a 50 percent chance of being carriers.

Clinical symptoms include: fatigue and muscle weakness -- beginning in the legs and pelvis, but also occurring less severely in the arms, neck, and other areas of the body; difficulty with motor skills such as running, hopping, jumping; frequent falls; and progressive difficulty walking.

There is no known cure for Duchenne Muscular Dystrophy. Treatment aims to control symptoms to maximize quality of life.

 

© Copyright 2011 Greene County Daily World.

Author: By Nick Schneider
Source: Greene County Daily World
3.0 from 5 votes
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