Monday, March 16, 2015

Cerebral Palsy Awareness

Wear Green on 3.25.15 to Support Cerebral Palsy

I will be the first to admit that up until four and a half years ago, I didn’t know much about Cerebral Palsy (CP). I had heard of it, but I had no idea how it was caused or how many people were affected by it. That all changed on August 13, 2010 when I was told of the brain damage my four week old son had suffered. Somewhere along the way, he had suffered oxygen deprivation causing PVL (Periventricular Leukomalacia) which is damage to the white matter of his brain. I was told that there was no way to tell how extensive the damage was at that time, but eventually he would develop CP. That too, would become a waiting game to see what he would be able to do and what he wouldn’t. So, we waited.

Alex will be 5 in July. It has been a long road, one that I never thought I would travel. I have learned so much from him in the few years I have been blessed to be his Mother. His strength is undeniable; his smile will steal your heart and he draws a crowd wherever he goes. He has been in Physical Therapy since he was ten months old going two to three times a week, he attends a Therapeutic Horseback Riding program once a week and once a year we do a three month intensive therapy program at EuroPeds in Pontiac. He cannot talk and he cannot walk, but he sure can light up a room!

The reason I am telling you all of this is because according to cerebralpalsy.org, there are 764,000 people in the United States today living with some form of CP. I bet that number surprises you because we don’t hear much about it. Maybe a story here or there will pop up on the nightly news of someone who suffers from CP that has done something incredible, but there are hundreds of thousands of stories out there waiting to be told. Nearly 10,000 babies born each year will develop CP and 2-3 children out of 1,000 have CP. There are no two cases alike either, which makes it hard to fully understand this disability.

March is National Cerebral Palsy Awareness month and March 25, 2015 specifically is National Cerebral Palsy Awareness Day. On this day, we wear green to support the CP world and all month long we push for more awareness and more research. Having a child with CP is not cheap. The equipment, therapies, and specialist appointments add up. I am always fighting with insurance for one thing or another that would better my child’s life. It saddens me that I have to fight the way I do when clearly it would benefit him.

On March 25th, my husband and I are attending a conference in Ann Arbor, MI called Reaching for the Stars. It is a foundation of hope for children with cerebral palsy. I am really excited to be a part of this and to see what kind of  ideas they have moving forward. This is the first type of organization like this in Michigan. Their goal is to be a support system for families with cerbral palsy, do some fundraising and advocate to bring more awareness. You can check out their website for more information: reachingforthestars.org

Please show your support and wear green for CP on March 25th, and share with the world that you care. 





1 comment:

  1. Lovely to discover your blog. Your boys are so spunky! I will be wearing green on the 25th! Bron

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