Family thankful for Muscular Dystrophy Weekend

Posted: Published on August 31st, 2013

This post was added by Dr Simmons

This weekend, firefighters from around the area will be completing their annual boot drive to help raise money for those suffering from muscular dystrophy. Last year, Leeds and Grenville firefighters raised more than $30,000 for the cause.

Jordyn Deveau-Yurich, a soon-to-be Grade 6 student from Lombardy, was born with muscular dystrophy. Despite her obstacles, Jordyn is always in good spirits and doesn't let her disability hold her back, says her mother, Daphne Deveau.

In this week's Q & A, Daphne Deveau explains more about muscular dystrophy and how her family benefits from the funding raised over the weekend.

Q: How old was Jordyn when she was diagnosed with muscular dystrophy?

A: We knew at about a month old that there was something. We knew that she had some form of muscular dystrophy probably at about five months old, after several tests. Then, the type that she had wasn't (known) until after she was one, because it's extremely rare.

Q: What type does she have?

A: It's a congenital muscular dystrophy and it's called Merosin deficiency type.

Q: How is that different from other types of muscular dystrophy?

A: Well, there are so many different kinds of muscular dystrophy, so they're all different in their own ways. Jordyn's is just skeletal, so only her skeletal muscles are affected. Her smooth muscles like her heart, her brain and her organs are all okay. So, her heart muscle isn't affected by this particular type of muscular dystrophy.

But, the form that she has, the Merosin is a protein or an enzyme that you and I have that Jordyn's body doesn't, or it has very small amounts. That's found in your protective layer of your muscles, so all her muscle layers underneath are all compromised, so it makes her muscles very weak.

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Family thankful for Muscular Dystrophy Weekend

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