Today is the second annual National Cerebral Palsy Awareness Day. Last year, Congress dedicated March 25th to be dedicated to Cerebral Palsy Awareness and I’m glad that the spotlight will be on this disorder which affects my sweet son, Caleb. It’s been almost 2 years since our diagnosis and while our picture of Caleb’s prognosis has become clearer with time, the cause of his cerebral palsy is still unknown.
Caleb’s CP isn’t debilitating and all-consuming like I thought it was going to be when our doctor’s first confirmed the diagnosis. Sure, he sometimes still needs to be carried and it might take us a little longer to get places, but that’s our version of “normal” and we’ve all gotten used to this way of living. Caleb is still making great strides and can now stand independently for a few seconds at a time! He’s gotten really fast at moving around with his walker and loves to “run” outside at every opportunity.
Caleb still receives physical therapy and occupational therapy regularly, as well as weekly swim lessons with his twin brother, Wyatt. He is also going to be considered for a surgery in the upcoming future, which will be described in a separate post. Caleb is a smart, happy and silly guy with a great sense of humor and he can bring a smile to anyone’s face. He leads a wonderful life full of monster trucks, goldfish crackers, Yo Gabba Gabba, daycare friends and therapy appointments. He doesn’t know what Cerebral Palsy is, only that he needs help learning how to walk. When the time comes to explain CP to him, I wish I could have more answers as to why he is affected but his identical twin was spared. The simple truth is that I have no idea.
It is astounding that research for Cerebral Palsy, the most common motor disability in children, impacting over 800,000 Americans is so drastically underfunded.
There is no dedicated, line item federal research funding for Cerebral Palsy at the CDC or NIH. More research would mean the possibility of prevention and earlier diagnosis, more effective treatment options, and eventually the possibility of a cure.
Please take a moment of this special day to sign (and share!) the National Pledge for Cerebral Palsy Research Funding! It would mean the world to our family. Thank you!