Tuesday, February 25, 2014

Rare Disease Day

I was surfing the web and blogs and I came across this web site. www.GlobalGenes.org is an organization that is dedicated to bringing awareness (and research money) to over 7000 rare genetic diseases! I have added our story to the hundreds that are already on there. Click on the link above to go to their web site and check it out. Our little man is so rare that x linked hydrocephalus was not even in their database! I added it in hopes that someone else has heard of it and would like to connect with me. Please share this post, picture, or Global Genes web site to spread awareness and WEAR YOUR JEANS on FEB 28th! Our guy has been through so much and has proven the doctors wrong. He has made big strides and will continue to improve every day. Lets help them out by supporting their cause!

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