Saturday, 16 February 2008

Friday Night at the House

I had a great night at the house. My Friday night partner Tony was unable to be there (which is not the reason for it being awesome). Tony and I have worked an 'every other Friday night' shift for as long as I have been at the house. Most often we always have something on the go and our super-duper back up guy Martin takes our place. I don't think I have seen Tony in 2 months!

Tonight in the house I hung out with Amanda, Saul, Justin, and Eddie (not their REAL names). The boys are teens, two of them are turning 19 this year which is both a fantastic and sad event at the same time. Canuck Place is a children's hospice...the boys become adults this year and therefore Canuck Place is no longer an option for them. That is the sad part for Graduates. The happy part is that they have been living to see the day they become adults. Not many do at Canuck Place.
Amanda is 5. Cute as a button and more mature than the 18 year old guys that she was hanging with!
After dinner Saul went with his family to watch Zoolander. The rest of us went upstairs to decide what to do. Ms. Amanda asked if we could go to the art room and away we went. So there we are...a 5 year old who can't decide what to do and a couple of 18 year old who can't use their arms because of the effects of Duchenne's Muscular Dystrophy.

What would you do? I don't know how it happened but the next thing I know I am inserting a long paintbrush into a plastic container and taping the contraption to Eddie's head. After a couple of modifications Eddie is ready to paint his first painting with his head. Very exciting!

"I have to go pee", says the little voice behind me.
All of us load into the elevator, painting contraption included, and head downstairs.

Back upstairs Eddie begins to paint. RED is the colour. Poor Justin is chuckling away the whole time...Amanda is playing in some plastic beads that look like candy. Eddie finishes the painting.

Now its Eddie's turn to go down to the kids floor. All of us load into the elevator and down we go.

Upstairs again and we go to the classroom armed with a bucket of nail polish. Set up Eddie on the computer and the boys surf. The boys decline the offer of having their nails done by a 5 year old girl...but I jumped at the opportunity:

Saul had come up and was surfing as well. Each of the boys has Duchenne's Muscular Dystrophy which is a sex-linked genetic disease, meaning that the mum OR the dad's chromosome is where the gene is. With Duchenne's the X chromosome from mum carries the mutated gene. The gene responsible for making dystrophin has been messed up and passed along. Dystrophin is a muscle protein that helps to keep muscle fibres stuck together. No dystrophin and your muscles begin to lose the ability to move.
Another night where I feel I received way more than I gave.
Thanks guys,


1 comment:

Alexander (Sandy) McDonald said...

You're a helluva guy Malkiecky....

love the nails. Don't go using a 5 y.o. girl as an excuse've always liked the color.....



The Blog

My name is Malcolm and I was a volunteer at Canuck Place Children's Hospice in Vancouver, British Columbia, Canada for nearly seven years. Now I support them by raising money by participating in the Canuck Place Adventure Challenges!

I said hospice. Not really a word that you associate with children but there you go. We will tell you about the house as this blog progresses with the hope that you will learn, and as you learn we hope that you will share. The purpose of the Adventure Challenge is to raise money for AND awareness about Canuck Place.

The name of each kid at the house you read about has been changed.

September 14th and 15th are the dates for the next Adventure Challenges.

You can sponsor me for the race here: Adventure Challenge
Maybe you should do the race?


Just a quick note about the names of the kids in the house that you will read about: they are made up!