Tuesday, April 5, 2016

Max's Super Squad Team for the MDA Walk and my message

We will be walking next month for Max and his Super Squad Team at the Clipper Stadium for the MDA Muscle Walk 2016. I have my own goal of fundraising for the walk, and I'm almost there.

It's a great time to donate because from April 4-April 8 Quantum Rehab will match your donation!(monies will be tallied after the walk itself). Here's a link to donate:

 Max's Super Squad Team/ MDA Muscle Walk 2016

Since we have a new diagnosis I thought it would be meaningful to share some things about our experiences with MD on our page. I think it's so important that kids with muscle wasting conditions receive proper treatment, so here goes...

If you have known us for the last 10.5 years, you would say that we had a healthy son named Max. You may remember a time when he seemed tired from walking around, or not quite himself at the end of the day.
But that is what you may remember...that and the fact that he is a fun kid, with an intensity about him- obsessed with anything that sparks his interest whether it be Jim Henson one day, The Peanuts another day, Sharks another, etc. You may remember he likes to eat pizza and he talks about his sister, and tells funny stories:)
That is what we think of when we want to describe Max- but now we know that when he got tired easily it was from a terrible thing called Muscular Dystrophy.

Over the last year and a half we have learned a few important things that we'd like to share to bring awareness to MD in children:
1. Kids with Muscular Dystrophy can look like any other kid.
2. No one should tell you your kid is "just fine" unless they are a doctor (that's harsh...but it's true). My husband and I questioned why he would be so tired leaving the zoo, or parks...why he seemed so tired at school, but we were made to feel like it was us...we weren't fit or active enough as a family...Max was lazy...or Max was unique, and I was an annoying Mom when I acted concerned.
3. A diagnosis of MD can take a long time. Max went to several specialist appts including appts at Neurology, Genetics, and the MD Clinic. Invasive testing had to be completed for the drs. to make the diagnosis so far, including blood labs, head MRI, leg MRI, EEG, Echo, EMG, Muscle Biopsy, and genetic testing. We still need more genetic testing and may be sent to CHOP in the summer or fall.
4. There are a lot of daily adaptions. From electric toothbrushes, shower chairs, wheel chairs, pencil grippers, speech recognition writing software, seat cushions for posture, easy to wear clothing, the list goes on. There are also adaptions we make during the day, especially planning what we are doing...if we will use the wheelchair...how long we will be out. And then we start getting ready earlier than one might expect as getting ready takes longer when you have muscle disease.

One huge lesson I've learned is how much people take for granted simple things they can do. If you can easily wash and comb your hair, and run out to your car in the morning you really have it made. If you can write fast, open a soda can, and run into and out of a store, you have it made. You are floating on air if it doesn't hurt to walk far.  You are so lucky and you don't even know it!

Thank you for supporting Max and others fighting muscle disease!

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