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.

 

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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.

 

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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.

 

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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!

 

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Talk to you later!

Yvette K. Carol

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

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Comments
  1. lynnkelleyauthor says:

    Bravo, Yvette! Awesome post shedding much light on Sturge-Weber. Thanks for including a pic of me. That was a surprise! My favorite pic is the one of Christopher holding the proof of the book! So special!

    Liked by 1 person

    • yvettecarol says:

      That’s my favourite pic, too, Lynnie. Snap!
      In fact, when I got up this morning, I didn’t know what I was going to blog about this weekend. Then I remembered the absolute delight, and immediate rush of emotion I felt when I first laid eyes on this precious image (on Facebook yesterday). I thought, how can I not write about this exciting project? Ha ha.
      It’s infectious.
      Besides, we need to keep the conversation going, keep talking about it until the launch. I might blog about it each time I post until the thirteenth! 🙂

      Liked by 1 person

  2. Catherine Johnson says:

    Great post, Yvette.I’d like to reblog this tomorrow if you don’t mind.

    Liked by 2 people

  3. Awesome write-up for the anthology, my dear! I can’t wait to have my own copy! ❤️

    Liked by 2 people

  4. Catherine Johnson says:

    Reblogged this on Catherine Johnson and commented:
    Great post about the anthology for Sturge Weber from Yvette 😃

    Liked by 1 person

  5. I heart you, Yvette. Our love for you is so humongous it feels like we could bust. The pictures are beautiful. I love the picture of Christopher too. He is so excited that he can hardly stop talking about it. Thank you, sweet friend. (I did like amazing author too.) *snort*

    Liked by 1 person

  6. Rene Aube says:

    I’m looking forward to getting my copy of the anthology. What a precious tribute to those priceless special needs little (and big) lovies.

    Like

  7. yvettecarol says:

    A hundred times my pleasure!
    Feels so good to be doing something to help 🙂
    That’s great that Christopher is so jazzed about it – as we all are, of course! Heehaw 🙂

    Like

  8. Beautiful written tribute, Yvette. Moved me more than words can say. I look forward to reading my copy of the anthology. Thank you for doing this.

    Like

  9. […] Campbell – Kissed by an Angel Short Story Yvette Carol – Grandpa and Loor Catherine Johnson – Kissed by an Angel Poem Lynn Kelley – […]

    Like

  10. I am new to the Sturge-Weber community, as our daughter was just born 3 months ago with the diagnosis. Thank you for sharing your story! I know we as SWS parents can get stuck in the now and it’s refreshing to see the story of someone else who has come out of the other side ok. Thank you again for your passion and sharing!!

    Liked by 1 person

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