Twenty nine years ago, Christopher Campbell was born with Sturge-weber Syndrome. His parents were told their beautiful baby would not live past two years of age.
But Christopher defied the odds. Despite the seizures, despite the surgeries, and despite the pain, he has grown up. He leads a full life on the farm with his family. He is a black belt in karate. Helped by his loving parents and big family, his progress has been enabled no doubt by a great deal of love and support. It’s commendable he’s achieved so much and yet, the reality is he suffers multiple seizures, and endures regular surgical and medical procedures while the experts turn him into a human pincushion.
One of the problems faced by Christopher, his family, and other families in their position is that very little is known about Sturge-weber.
‘Sturge-Weber Syndrome is a rare brain disorder,’ said Robyn, his mother, my friend, and an amazing author. ‘It is characterized by a port-wine birthmark. It can cause seizures, paralysis, stroke, blood clots, glaucoma, and a host of other problems. The seizures in Sturge-Weber kids are really mini strokes.’
What’s desperately needed is more research into the condition.
Robyn told us about an initiative started by another enterprising warrior parent.
‘The Sturge-Weber Foundation was founded by Karen Ball. Her daughter was born with the disorder and she realized there wasn’t anywhere folks could go for support with this rare disease. So she started the foundation, which is now a place where parents can go to find information. The researchers are working diligently to find better treatment options for SWS and maybe even a cure someday. Recently researchers identified a mutation in gene GNAQ on chromosome 9q21.’
The scientific work is still in its infancy and requires more funding.
The issue, the way my friends and I saw it, was to:
*Shine a light on Sturge-weber Syndrome.
*Spread the love.
*Raise money for research.
What do writers do best? Yep. You guessed it. Write! We came up with the idea in 2014 of compiling an anthology, Kissed by an Angel, an MG book about “gifted children” to be sold with all proceeds to benefit the Sturge-weber Foundation.
Everyone either knows someone who has a special needs child, or grew up with a sibling with special needs, or has a child themselves. Somehow, we all are touched by these gentle beings in one way or another. In the case of me, and my family, my middle child, Sam-the-man, has Down Syndrome. The likelihood of having a child with Downs is one in 600, so they say; therefore this lightning strike or that of other syndromes like Sturge-weber can be random and happen to anyone.
What can we do? How do we help our brothers and sisters, children and friends?
In the case of the pioneering research being done into Sturge-weber, and the battler, Christopher Campbell, we can start by spending a few dollars on a great book.
Buy Kissed by an Angel when it comes out, Dec. 13 and give it to a child you love this Christmas!
This project is set to launch into the stratosphere Dec. 13. We aim to sell a gazillion copies of this special book. Through doing so, we hope to:
*Shine a light on Sturge-weber Syndrome!
*Spread the love!
*Raise money for research!
‘I hope that the research finds better treatment options,’ said Robyn.
Me too, Robyn, me, too!
Talk to you later!
Yvette K. Carol
‘You have to accept whatever comes with the best you have to give.’ ~ Eleanor Roosevelt