Hi, I'm Margaret and my grandson Raymond was diagnosed with cerebral palsy (CP) at age two. Before he was diagnosed, I didn't know too much about CP. The statistics are eye-opening:
CP is the most common lifelong physical disability worldwide
a baby is born every hour with CP
1 in 3 people with CP cannot walk
1 in 4 people with CP cannot talk
3 in 4 people with CP experience chronic pain
1 in 4
people with CP also has epilepsy
The lack of funding for cerebral palsy research is mind blowing. Simply said, I immediately wanted to make a difference in the world of people diagnosed with CP. Raymond is now 6, and has a co- diagnosis of a rare VAMP2 genetic disorder, but that doesn’t change my passion to raise awareness and much needed funds for CP research in addition to support to find an ultimate cure for his genetic disorder. I want to hear the amazing thoughts that I am confident are behind Raymond’s beautiful smile. I want Raymond to have the opportunity to live his best life. Raymond continues to make amazing progress, thanks to his mother and biggest advocate, his loving family and wonderful team at Nemours outpatient clinics. But to accomplish these successes takes hard work, advocacy, dedication, and fundraising to support the wonderful organizations that are working hard to change what's possible. My personal goal is to consistently educate children and adults about CP, so they will better understand, encourage, accept, and include those with CP. I also want to support the wonderful people and organizations that directly impact our lives. In additional to our participation in STEPtember and supporting rare genetic disorder causes, my daughter holds an Annual Raging Raymond Fluke Tournament to support Nemours which has raised over $20k to date and promises to grow bigger and better every year! I ask you to join me in my goals; be supportive, accepting, inclusive, and raise awareness and funds for CP and rare genetic disorders in any way you can. Just ask me and I will be happy to assist! You can follow our story here at A Ray of Sunshine. If your or your organization would like to learn more about participating in the Annual Raging Raymond Fluke Tournament, please reach out to Alex Gaudlap at: [email protected]. If you would like to learn more about STEPtember, please reach out to me directly at:
STEPforA [email protected]
