Sturge-Weber Syndrome is a rare brain disorder. It is characterized by a port-wine birthmark. It can cause seizures, paralysis, stroke, blood clots, glaucoma, and a host of other problems. The Sturge-Weber Foundation is a place where parents can go to find information. ~ Robyn Campbell.
Since meeting writer, Robyn Campbell, through our “tribe,” Writing for Children, over on Wanatribe, we’ve learned about her brave son, Christopher, who lives with Sturge-Weber Syndrome, a rare brain disorder. Though doctors predicted Christopher would not make it to the age of two, he is twenty nine today.
One fine day, in October of 2014, WfC member, Teresa Robeson came up with the idea that we put together an anthology, to benefit the Sturge-Weber Foundation, and in that way, she started the conversation. Lynn Kelley, Catherine Johnson, myself and of course, Robyn, jumped aboard the project.
Robyn loved the idea. She said, ‘The seizures in Sturge-Weber kids are really mini strokes. I really hope that the research finds better treatment options. The slogan has always been, the stronger the wind, the tougher the trees. Maybe folks will donate and at the very least maybe when they see a Sturge-Weber child or adult, maybe just maybe they won’t stare. 🙂 That’s worth it all.’
Her words galvanized our effort. As we worked on our stories, over the months, more and more writers came on board, from other areas, until we had eleven contributors.
In celebration of the fact that our anthology is soon to be released, I interviewed Robyn Campbell about her feelings and thoughts.
In your own words, what sort of book is KBAA?
First off, let me thank you Yvette, and all the contributors for over a year of solid work for the Kissed by an Angel Anthology. I feel so blessed to know all of you in such a personal way. This past year has been a struggle as doctors have tried to find the reason Christopher is having these latest problems. To me, Kissed by an Angel is a book of hope, magic, love, joy, and the belief that anyone can do anything if they set their mind to it. The stories are the best of the best. You writers are the best of the best. I will miss our family after the launch. That’s what it is, you know? We’re family.
Definitely! I’m grateful to have had something concrete to do, Robyn.
Tell us what this anthology means to you? How did you get involved?
The anthology means so many things on so many levels. This is our chance to do something for research. We know the gene that causes Sturge-Weber (GNAQ), so now we are chomping at the bit for better treatment options and dare I say it? A cure. I want to know that I had some say in this. That I made a difference toward finding a cure. It makes my heart cry to hear of these deaths from Sturge-Weber that we’ve heard about. It brings it too close to home. Way too close. I got involved after Lynn Kelley (who has worked on formatting and everything else, she needs a medal), Yvette Carol (that’s you), Teresa Robeson, and Catherine Johnson (our tribe) started tossing around the idea of doing an anthology to benefit the Foundation’s research. And may I say that Christopher just wants to give all of you a colossal smooch on the mouths. Well, except Erik. Haha Actually, Christopher loves Erik and his family. He KNOWS they pray for him. That means a lot to him. He prays for them and for Sam and for all of you.
Thank you, Christopher!
Robyn, your story starts the whole book. What is your story about and why did you choose to include it?
My story is titled Kissed By An Angel. It is real life turned into a fictional story. But it is very true. It’s about Christopher before he got his black belt. When he was having many seizures. Every day he would have seizures. All day long. He’d end up in the hospital. It was a trying time. Especially, because he was trying to test for that belt.
The anthology stories are about special powers of middle-graders. I wrestled with writing a story on magic. But it didn’t feel right to me. I always believed Christopher had his own special powers. So I decided to write the story that is in the anthology. It was hard. I cried so much while writing that first draft. All those memories came flooding to the surface. I wrote his neurologist into the story too. I dedicated it to Dr. D’Cruz. And to someone else. Shhh. I can’t say anymore. All of those seizures are why Christopher will always live with us on the farm. He will never drive. But he can read and write. He can do much more than doctors ever thought he would. I give all the credit to God. Christopher had a very special request of the authors in the anthology. That they all sign his copy. Poor Yvette lives in New Zealand. But they all agreed. He is so excited to get his anthology.
Tell us a little about the idea of the charity initiative behind KBAA, with all proceeds to go to the Sturge-Weber Foundation, as a lot of people are unfamiliar with either the syndrome or the organisation.
The Sturge-Weber Foundation is a place where parents can go to find information. Karen Ball started it after her daughter was born with Sturge-Weber. She works tirelessly for the families. The foundation has research irons in the fire. We hope for better treatment options. 100% of the proceeds from the anthology goes to the Foundation. I will set Karen up with CreateSpace as soon as we’re finished with everything. That way, all money goes into the Foundation’s account. I’m super excited. I want this to be huge. I want this to help bring answers. Please buy a copy. It will be in print and ebook. Thank you, Yvette. For everything.
Thank you, Robyn!
The anthology is due for release Dec 13. In the meantime, to whet your appetites, here’s a cover reveal for the anthology. Ta da!
Our hope is that we have given people a simple way of helping an awesome charity. Spend a few dollars on a really great book you can read with your kids this Christmas. 100% of the money goes straight to the coffers of the The Sturge-Weber Foundation.
‘Every story started with just an idea in someone’s head. Isn’t that a fantastic concept?’ Bob Mayer
Here’s what other contributors are saying:
Robyn Campbell – http://robyncampbell.com/
Sharon Mayhew – http://skmayhew.blogspot.com/
Theresa Milstein – http://theresamilstein.blogspot.com/
Erik Weibelg – http://ThisKidReviewsBooks.com
Vivian Kirkfield – http://viviankirkfield.com
Ellen Leventhal – http://ellenleventhal.com