Tuesday, August 28, 2012

Wheels for Evan

It is still August and that means that it is still SMA awareness month and this is going to be a post about that, although a bit more personal.  

Evan is such a sweet, beautiful, enchanting and happy kid.  Most people who meet him only see this and that is a good thing.  Of course there are some things about Spinal Muscular Atrophy that will challenge little Evan throughout his life.  For Evan, who has type 2, weight bearing is the way to delay many of the challenges that he will develop.  

Last year we were at the SMA camp out in Chilliwak, BC with a bunch of other kids who also have SMA and we were introduced to a different kind of electric wheelchair, a standing wheelchair.  This is a wheelchair that at the push of a button can get Evan from a sitting position to a standing position and he is even able to drive “standing up”.  One of the benefits of being in a standing wheelchair is the social benefit of being on the same height level as your peer.  Also, this chair is ideal for a child with SMA because when they sit all day in a wheelchair they develop scoliosis, which affects their lungs and other organs.  It can be seen in the following presentation that was given at a SMA conference a couple of years ago:

We try to get Evan into his manual stander as much as possible but he is limited to the areas he is able to use this device.  If he had a standing wheelchair he could be “standing” a lot more because his wheelchair would help him into that position.  The wheelchair won’t prevent Evan from getting scoliosis but it will delay it.

This is the wheelchair that we think would be perfect for our Evan:

This is where you come in.  This wheelchair costs approximately $40,000 and the government will not help with any of the costs.  They will pay for a normal electric wheelchair (like the one he has) but they will not pay for a specialized one like the Ranger.  We are throwing this golf tournament to raise the funds to help us buy this wheelchair for Evan.  The tickets to the tournament are $100 and we will get nine holes of golf at Silverwing golf course.  After the tournament we will enjoy some food in the clubhouse and participate in a small auction.

Not able to make it to the tournament and love to golf?  For $100 you can get two rounds of golf at either of these locations in the Calgary area,  Silverwing golf course, Boulder Creek golf course.  You can also buy a round of golf for $75 for either Elbow Springs golf course or the Wilderness Club in Eureka, Montana.

100% of all money given (whether by donation or ticket sales) goes towards Evan's chair.  

The tournament will be a best ball tournament and we will have prizes to compete for.  We have created a Facebook page with information about this tournament.  If you don't live in the area, or unable to attend this event for any reason but would like to help any way that you can, Evan has a paypal account attached to the Facebook page so that anyone is able to donate money that will go towards Evan's new wheels.

It is so important that we are able to get this chair as soon as possible so Evan is able to reap the benefits it will provide before it is too late to do so.  

“It takes a whole village to raise a child.” 
I know that together we can make this happen!  

this is Evan last year testing one of his friends chairs.