BENEFITING: CRANIO CARE BEARS
When our son was six months old, he had his head cut open from ear to ear. Surgeons then broke apart his skull and removed a piece of it. This, the doctors had told us, would allow room for his brain to grow, make sure he didn’t go blind one day and make it so his odd-shaped head would be “normal.”
Craniosynostosis was his diagnosis; it’s a relatively rare condition that affects about one in 2,500 babies. We’d never heard of it and, as you can imagine, we were terrified when our pediatrician told us. We spent an entire weekend literally floored, reading stories and looking at pictures on the Internet that brought us to tears. Then, we found a Facebook page called Cranio Care Bears. It was a resource for parents facing craniosynostosis and it was the first time we felt like this might be OK.
Our son Cole is doing great now. He had surgery last September, recovered on schedule, wore a helmet for six months and now, to the naked eye, looks like a normal toddler. He has a lightning bolt scar from ear to ear that you can see if you look close. With the one-year anniversary of his surgery almost upon us, we wanted to help the organization that helped us. Cranio Care Bears gave us hope. It made us feel like we weren’t all alone facing this horrible, mysterious thing that we’d never heard of. The people behind it — two cranio moms, one from Colorado and the other from Washington — share the stories of others going through the surgery. They send care packages to families in the hospital. They offer one-on-one counseling. We’ve never met them, but we’re beyond thankful for them.
So in the name of our son — and in the name of little kids who fight hard and other parents who need hope — we've organized a fundraiser Aug. 20 at Tioga-Sequoia Brewing Co. in Fresno, Calif. There will be live music, beer, food, and a raffle, all of which will help the cause. If you can't be there and would like to donate money online, you can do that here. We’re not keeping a penny of what's raised and will be chipping in a donation of our own. We’re just thankful our son is OK and we hope we can use this experience to help other families find their own peace of mind.