Posts Tagged ‘Sturge-weber Syndrome’

 

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.

 

11949395_10207581477956368_2452968626728683255_n

 

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.

 

10418512_10203439264010110_2728474166291520486_n

 

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.

 

Lynn Kelley

 

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.

 

Christmas card

 

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!

 

Christopher Campbell

 

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!

 

024

Talk to you later!

Yvette K. Carol

+

‘You have to accept whatever comes with the best you have to give.’ ~ Eleanor Roosevelt

Advertisements

10418512_10203439264010110_2728474166291520486_n

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.

11951900_10207581493596759_1835847555266257517_n

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.

11949395_10207581477956368_2452968626728683255_n

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.

KBAA, cover art, 2015

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!

11228901_10207589025585054_3916236779579651530_n

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.

Easy as!

 

Yvette Carol

+

‘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