Looks like we are just going to get into the Pfizer Myostatin Inhibitor trials with Hayden.  He turns 10 in just over a month and we're going for screening next week to Vancouver.  We were really starting to wonder if he was going to get in, but the folks at Vancouver pushed and unfortunately had to bump another boy that was scheduled to be the first at that location.  The other boy will still get in on the trial, but Hayden would have been excluded the day he turned 10 so they had to move…

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So this week, one of our biggest hopes came true.   About a year ago, I left my job to take a consulting position and we moved to British Columbia.  We weren't particularly happy with the services we were receiving in Saskatchewan and decided if we could, we'd move to be closer to one of the Children's hospitals in Canada.  We didn't want to move East to be near Toronto, so BC was the only other choice.  There certainly were some stressful times during the move and since, and it wasn't easy…

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So I'm sure there are at least a few folks from PPMD that also visit Reddit.

Reddit is donating about $850,000 evenly split among 10 charities.  PPMD is on the list but isn't getting much attention.  If you are a user, you can go here:

http://www.reddit.com/donate?organization=311405490

And click the 'Vote For This Charity' button.  It wouldn't hurt to vote up the submission which…

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Hayden (our oldest) is in Kindergarten and I wasn't too surprised when we gave me a card this morning they made in class.  What did surprise me was the poem included in it, and how I couldn't hold back a few tears after reading it.  It hit a little too close to home and made me thing about how important it is to slow down once in a while and enjoy the time we have.

 

"Walk a little slower Daddy,"

said a child so small,

"I'm following in your footsteps…

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Well, it looks like the budget that was proposed today won't go through, and instead we'll go to the polls.  The highlights most of the news stations carried did not have a lot of detail, but there were a few things of interest to our community, and one pretty big one.

 

• This 15-per-cent non-refundable credit on an amount of $2,000 will provide tax relief for caregivers of all types of infirm dependent relatives, including, for the first…

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I just found yesterday, that most of the big car companies have reimbursement programs for some mobility aids on our vehicles.  Our boys are still pretty young so we're not looking at wheel chair lifts just yet, but we did pick up a 2010 Grand Caravan a few months ago and had planned on putting running boards on anyways, and now it looks like they'll be covered.

The plan with Chrysler varies a bit from the US to Canada, but here's what I found out this morning.  Chrysler will…

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While looking for government programs here in Canada for people with disabilities, I happened upon the Registered Disability Savings Plan. It looked great. The government would match from $1000 to $3000 per year for money put into these accounts. There was more money available for low income households as well. We thought this would be a great way to put some money aside for their future needs



I had an appointment with the bank today to find out some more details about the plans. I… Continue

Mandy and I had both been wanting to get tattoos for a while. We each had one previous to our relationship and have often talked about getting another. It wasn't long after the diagnosis she decided she wanted the boys' names, and I thought that would be a heck of an idea. So we finally got them done this weekend. Mandy's is sort of a tribal anklet with their names as a centre piece. I already have an anklet, so I opted for one on my chest, over my heart. …





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On Saturday, May 15th, Mandy and I held our first ever charity event for our boys. After diagnosis about a year ago, the first charity we came in contact with was http://jessesjourney.com. Since then, we've been in regular contact them, and were lucky enough to have the founder, John Davidson, come out and visit us last month. Once the initial shock wore off, we new we wanted to do something to help the cause, and decided a run/walk in coordination with… Continue

I only recently joined this community. My name is Andrew, and my wife Mandy and I have two sons, Hayden who just turned four and Cameron who just turned one. It was early this year, when we learned our nephew, Noah, had been diagnosed with a form for muscular dystrophy. To be honest, at the time, I knew nothing about it. I asked my wife how serious it was and could tell right away it was very serious. It wasn't long after that we learned it was Duchenne, and from there I was able to look it up… Continue