Author’s Note: I am still struggling with how to get accurate information to our friends as well as chronicling how we are coping with our son’s diagnosis without revealing too much personal information about our son and family. It seems incongruous to place true accounts on such a grave matter amongst excessive Prince posts and low-brow humor. But for now, allowing my blog to mirror the sprawling, anxiety-filled state of my mind seems organic.
A good feature news story captures the imagination with interesting information and pulls at your heart strings. This is exactly what a recent story about a little girl who traveled from North Carolina to Johns Hopkins Hospital in Baltimore, Maryland to have half of her brain removed to stop debilitating seizures, restore her cognitive abilities and, ultimately, to save her life. With half of a brain, she is a happy and functional child, which is an inspiring story of overcoming adversity.
But for our family, Cameron Mott’s journey is more than a feel-good story to watch on a morning show while drinking coffee and getting the kids ready for school. We discovered this story about six days after receiving the news that our five-year-old son has Rasmussen’s Syndrome, a devastating disease that causes destruction to one side of the brain, single-side paralysis, and mental retardation if the condition is allowed to progress. The only cure is a life-altering brain surgery known as a hemispherectomy, where one side of the brain is either removed or turned off.
Brain surgery followed by intensive physical therapy will most likely occur in a few weeks for my son. Albeit terrifying, we accepted the surgery as a positive that will prevent us from losing our son to mental retardation. During this arduous time for our family, seeing Cameron Mott’s story gave us hope when we didn’t think there was any to be found.
Here is the link:
