BENEFITING: THE CHILDRENS MEDICAL RESEARCH FOUNDATION INC
On October 15th, 2014 I will celebrate my 22nd birthday. I watch as my family and friends struggle to find something they can give me. There is nothing I need except comfort, there is nothing I want except a cure.
When I was diagnosed with Sanfilippo over 19 years ago my parents were told that they would not see a treatment in their lifetime and to expect a cure was futile. We as a family were very fortunate that our friends, family and even strangers believed that we could make a difference so Rhianna's Hope began to raise money to fund medical research. We were also blessed to find Sanfilippo parents Brad and Sue Wilson who had established The Children's Medical Research Foundation. The money we raised had an avenue to go where it truly could make a difference.
Today my parents and I have a level of gratitude that is hard to express in words. A tremendous amount of kindness and generosity has brought us to this remarkable moment...there is now a timeline to a cure. This is a critical juncture because what has not changed is our race against the clock and the need for funding. I ask that you help me celebrate my birthday with renewed HOPE and continued support of our fundraising efforts.
Sanfilippo is a relentless illness, I continue to fight to meet my challenges but time is my enemy. I have not been able to speak since the age of eight so you may wonder how my words have made their way to paper - my mom found them in my eyes. Please join us, the Wilson's and the other Sanfilippo foundations as we step up our efforts, there is strength in numbers, a cure is possible!
With heartfelt thanks, Rhianna