Meet my little cousin Josh (boy on the right). He's eight. He suffers from a debilitating disease called Muscular Dystrophy. He also happens to have the most debilitating strain of the disease called the Duchenne Strain. 5 boys of the Myrtle and Evan Jensen family suffer from this disease.
This particular strain is carried by girls but only affects boy (it is passed from mother to son). If you are a carrier, it is a 50% chance that your baby boy will have it. 3 of the 5 of my mother's (living) sisters are carriers. My mom is not, so I, thankfully, am not. The life expectancy is about 21. My uncle Wayne, the first of the family to have muscular dystrophy, died at the age of 20. Now there is Jared (who happens to be 24!), Josh, Benson, and Nicholas who currently have the disease. The child's muscles deteriorate throughout their life and he will eventually be confined to a wheel chair and later won't even have enough muscle mass to handle that. It's such a terrible thing.
Every year Lethbridge has a 5K walk for Muscular Dystrophy on the first Saturday in September. This year, Chris and Aubrey ran to represent! Jensen (on his first outing at 9 days old!) and I joined in on the fun by watching from the sidelines with Grandma Cahoon.

3 comments:
wow ashley, that was wonderful of you to make this post. Hopefully more people will participate next year, you are a doll! love, mom
thanks for posting about this ash. i always wonder how laurel's boys are doing. norah's first outing was at nine days old too! how are you feeling?? i was wasted after an hour! ha.
Hey, I hope you guys will enjoy our new family blog!
Take a look:
www.ellsworthfamily08.blogspot.com
Everything looks like it is going great for you, and we are happy to hear that! The little guy is adorable!!!! Congrats!
Post a Comment