MDA: Joseph and Ethan's story - WKOW 27: Madison, WI Breaking News, Weather and Sports

MDA: Joseph and Ethan's story

MADISON (WKOW) -- The MDA telethon airs live here on WKOW Monday, as it has for the past three decades.

Last year's telethon was the first for Candace Miller, and she admits it was hard for her.

Her son, Joseph, had just been diagnosed with Duchenne muscular dystrophy. This past year has been tough, as well.

As 27 News Anchor John Beard shows us, it has brought more heartache for this family, but thanks to MDA, it has also brought some hope and a little comfort.

Joseph is five years old and just started Kindergarten. He tends to walk on his toes. But other than that, he seems like a normal, healthy kid, at first glance.

But his mother first grew concerned two years ago. Joseph came to her crying, because he couldn't keep up with his cousin on the playground.

Candace Miller, his mom, says, "Just sitting there, watching that day, I realized a three-year-old boy shouldn't be having problems keeping up with a one-and-a-half-year-old girl."

Candace took her son back to the clinic where they had been before.. and where she was again told, 'don't be concerned; all kids are different.'

She says it was difficult to get in to a see a primary physician at that clinic.. and by Joseph's four-year check-up, she had researched and found "another" clinic.. where she saw a primary care doctor.

Miller adds, "As soon as I told him the problems I'd been noticing, it was like a light bulb went off. I could see his face change, and he said 'I need a blood test.' And I overheard him tell the nurses, I want this over to the hospital today."

That same afternoon - July 13th, 2009 - the doctor called Candace and told her Joseph had a muscle problem or dystrophy. Joseph has Duchenne muscular dystrophy.

Candace has been told her happy, playful child will likely be in a wheelchair by age 12. And the average life expectancy is 25 years.

Hard news for a mother to take.

Miller says, "What made it even harder is, in between finding all this out, I found out I was pregnant."

Two month after his birth, Joseph's little brother, Ethan, was tested.. and also diagnosed with Duchenne.

And Candace has been diagnosed as a carrier, despite no history in five living generations of her family.

Joseph's daily routine now includes a daily dose of prednisone, a steroid.. which has helped some.

Joseph Heimlich, little Ethan's dad, says, "Before we started the prednisone, he wasn't able to get the coordination to use the pedals on a bike. Since he's started that, he's been able to ride a bike, so that's awesome."

Miller adds, "When we started the medicine, he said, well it's gonna fix me right? And it's so hard to explain to him, it's gonna help your muscles, but it's not gonna fix them."

Ethan shows no signs right now; his parents can only wait.. and worry.

Miller says, "You don't normally have kids going into it knowing you're going to teach them all this, and then you're gonna watch them fight to keep it."

When explaining what it's like to have two young children with Duchenne, Candace says to imagine a wound that will never heal.

But she has learned - through her work with the MDA - there are others who know how she feels.

Miller says, "I'm able to realize I'm not alone. That was the hardest thing, feeling like I was alone."

Channel 27 is your official station for the MDA telethon. Our local coverage of this year's event will begin at 6:40 AM Monday.

We will be live throughout the day until 6:00 Monday night from the Madison Marriott West.

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