folkarchivist

Muscular Dystrophy

In Treasures on October 1, 2010 at 5:54 PM

Today I’m going to take a step forward from the past and write about my nephew, a wonderful little almost-8-year old boy.  I smile just thinking about him.  Which is how it should be.

My nephew was diagnosed in 2006 with Duchene’s Muscular Dystrophy.  The light of our lives, and the only grandchild in this branch of the family, was hung with a death sentence.  Not an immediate one, but a slow one.  Of course he doesn’t know any different and it certainly doesn’t seem to affect him, except sometimes when he’d like to run with the other kids but just can’t.  Muscular Dystrophy means that his body, instead of creating muscle tissue in his muscles, is creating scar tissue.  So while he can still walk, it is more and more difficult for him.  One day he will be unable.   Slowly his muscles will all stop working.  The heart is a muscle. Generally this happens before age 20.  (This is a brief very non-scientific description.  For more detailed info see wikipedia and Muscular Dystrophy Canada )

But enough of the depressing stuff.  There are wonderful people and charities out there.  Children’s Wish Foundation and Make a Wish Foundation are just two.  But they are two that have helped my nephew and his family have some “time off” from his diagnosis.  And while my nephew undoubtably loved his trips to Legoland (he’s a huge Lego fanatic), I am happy for the break it gave my sister and her husband.  Much of my sister’s time these days is spent finding funding to help them adapt their lives to my nephew’s special needs.  Currently they are selling their home–it has 2 stories and my nephew can not do stairs.  He also recently outgrew his stroller chair, an important mobility device.  A new one runs in the 1000s of dollars.  Soon he will require a motorized device, and that will mean they will need a vehicle that can carry such a device.   Medications and appointments are 100s of dollars each month.

As often accompanies such a diagnosis, my nephew’s learning ability is also affected.  So my sister is home schooling him.  Between school, medications and medical appointments (both western and non-traditional), my sister hardly has time to breath, as the saying goes.  One of the things, besides Lego, that my nephew loves is his horseriding.  Yup, horse riding therapy.  Now if you’re like I was before all this, you may have heard of this but really have no idea how riding a horse can be theraputic.  Basically the kids learn to ride the horse, and then do stretches, such as leaning to one side then the other, while seated on the horse.  It’s a fun way to get them to do exercises that benefit their muscles.  This is largely volunteer run as well.

So, to all you folks out there who donate money, time and other means of support to these wonderful programs, THANK YOU.  There is so little I can do, as an aunt in a distant city, to help my nephew, sister and brother-in-law and it relieves my mind to know they are being helped by kind strangers.

And as I re-read this posting, I see I seemed to have written more about my sister than my nephew.  They both amaze me so much, so often….I love them so dearly.  I think I’ll leave it at that.

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