Archive for the ‘Sturge-Weber Syndrome’ Category

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Robyn Campbell, mother of Christopher (who has Sturge-weber), compiled the recently-released middle grade anthology, Kissed by an Angel. Robyn wrote the awesome story which opens the book. She came up with the idea that we should circulate a paperback copy between the contributors to the anthology, for all of us to sign it. Then, this copy would be gifted to Christopher, from all of us, with our love. Bodacious, huh!

Christopher Campbell

We all jumped on board the idea. By signing Christopher’s copy, one by one, in our individual countries, we would bring the group together in a new way. The single signed anthology would then be something special for him and him, alone. A nice tribute to a brave young man, and perhaps, something to give him hope through the hard times.

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There I was feeling sad yesterday, thinking how unfair it was that it should be New Year’s Eve and one of my friends, who died before Christmas, wasn’t here to see it, when a courier drove up. I opened the package to find the paperback version of KBAA! Robyn had sent the anthology to me first, with a little personal note of thanks. Aww! My heart melted into gooey blobs.

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I signed the inside cover,

Dear Christopher,

This is for you!

With much love,

Yvette Carol

31/12/15

 

I was struck by the idea that receiving this copy on the very last day of the old year was somehow significant. There was portent wrapped up in this event somehow. I became seized by the thought that it was of the utmost importance to post it on that same day, in order to keep the cycle of the flow of goodwill going. I had done my part. The book was now the proverbial “hot potato” and had to be released to the next recipient.

Lynn Kelley

Re-packaging it and addressing the envelope to the next author on the list, I hopped back into my car and drove back to the shops. Indeed, it was in the post within two hours of my receiving the parcel. Our friend, writer and children’s poet and artist, Catherine Johnson, I pass the baton to you! Don’t forget to take a photograph!

One of the problems faced by Christopher, his family, and other families in their position is that very little is known about Sturge-weber. Christopher and others like him suffer multiple seizures, and endure regular surgical and medical procedures while the experts try to figure out how to help.

Here’s an easy way you can help. Buy our anthology! 100% of profits go to benefit the Sturge-weber Foundation who are currently doing cutting-edge research into the syndrome. Kissed by an Angel, is available on Amazon now:

http://www.amazon.com/Kissed…/dp/151936055X/ref=sr_1_9

 

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Keep Creating in 2016!

Yvette K. Carol

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Think of new things each day (or all day) to be grateful for. “Gratitude” is another word for “abundance,” because the things you are most grateful for become abundant in your life. ~ James Altucher

“People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.” -Elisabeth Kubler-Ross.

Christopher Campbell

This week a dearly beloved and heart-inspired project came to fruition. My author friends and I have been putting together a children’s anthology to support our dear friend, Robyn Campbell, and her son, Christopher (29) who lives with the little known or understood syndrome called Sturge-weber.

Our beautiful book, Kissed by an Angel is out now, available on Amazon.

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I thought that I would re-issue this earlier post, detailing the illustration I did to go with my story in the anthology, ‘Grandpa & Loor.’

A Photo Essay for ‘Grandpa & Loor’…

A few years back, I tried using computer software to “draw” but I didn’t take to it. I simply prefer pencils, erasers, pens, colour pencils, and paints. I’m old school. So, bear with me. For some people, this might be a trip down memory lane.

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First, I had to work up a sketch I liked. I borrowed the man’s expression from an old photo of my boys’ father and aged him by adding wrinkles, I borrowed the idea for the hair out of a Santa book from the ’70’s. I was seeking with this illustration to express how we caregivers and parents of special children feel about them, and how they feel toward us. Once I was happy with it on a feeling level, I had a pencil template.

Grandpa & Loor

I painted the background over with a pale wash of pink.

First wash, G&L

Next, I applied the first coat of watercolour. At this stage, I made a timeline of the process, by taking this snap when I started.

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I gave each area a slightly different shade, in order to alter the end look. The lesson I’ve taken from training in oil portraiture is to build layers. That’s where you get your depth.

At that stage, I added the second layer to the characters, according to what I thought the colours might be later.

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As I got onto the third coat, I started to use three or more variations of the shades and add areas of light and dark.

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The fourth layer always makes the tones more solid and real.

At that point, I switched from water colour to gouache, and started using the fine tipped brushes.

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I made the shadows more convincing.
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And, just like that, in the twinkling of a back-breaking eye, I had finally crossed the finish line, thirteen hours later!

I feel victorious. Art is magical, isn’t it?

What sort of art do you do in your life? What’s important to you creatively? Tell me in the comments….

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Keep Creating!

Talk soon,

Yvette K. Carol

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‘I’ve been thinking about my Christopher and how our family could never make do without him. He is the epitome of this quote: “People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.” -Elisabeth Kubler-Ross.’ Robyn Campbell

 

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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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.

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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.

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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.

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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!

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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

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‘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

 

 

 

A long time ago, in a land far away, I liked to sketch and paint. In this land, I illustrated my own children’s stories. You can see some of these paintings on the side panel. However, sketching and painting take time. As life moves on and brings more responsibilities, it becomes harder to indulge one’s creative sides.

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When I started writing The Chronicles of Aden Weaver, in 2005, I attended a writing workshop taught by award-winning author, Kate de Goldi. I showed her one of my hand-illustrated manuscripts.

Kate was blunt. “You need to choose whether you want to be an illustrator, or a writer, and really focus on that.”

I wanted to be a writer. Letting go of illustrating freed up my time, which was at a premium with children underfoot and in my hair. Here I am, with my first book in The Chronicles of Aden Weaver, series coming up for release.

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At the same time, another amazing project is coming to fruition.

A year ago exactly, some of my writer friends and I, gathered together to support our dear friend and colleague, author, Robyn Campbell, in her on-going efforts to raise awareness about Sturge-Weber Syndrome. We decided to write an anthology of short stories. Our concept was to write about gifted children. The book is called, Kissed By An Angel, and the proceeds will go to benefit the Sturge-Weber Foundation.

The launch date for Kissed By An Angel, is set for mid-September (TBC). Catherine, another contributor, also wrote about it in her post, Anthology Illustration.

Some of the writers in the group asked me if I would do the cover. I thought, Can I? I didn’t know. I hadn’t touched a pencil or paintbrush in years and besides, I might have gotten rusty. Nevertheless, I brought out all my art materials. I literally had to dust them off!

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I made four sketches and the KBAA collective of writers chose one, which most importantly also got the seal of approval from Christopher, Robyn’s son, who has Sturge-Weber.

Doing artwork however, as previously stated, takes time! Back in the day, I sat down and worked for hours on end. Move on a decade, and the sketch for the cover lay among the tissues on the kitchen table for days while the kids had flu. I’d draw one stroke, then dash away to blow someone’s nose, come back to the piece, draw a line, then race off to take someone a drink, come back, do another line, etc.

In the background, I still hadn’t finished putting in the edits to my own book. I got overwhelmed.

Friends suggested wisely, that you need to prioritise at times like these.

I made two things the top priorities: to finish putting the proof-reader’s edits into my novel, ‘The Or’in of Tane Mahuta,’ and to do the cover for the Kissed By An Angel, anthology.

I sat down at my computer with the proof-reader’s notes and stayed at my post until the pile whittled down to nil at eleven o’clock last night. Then, I posted the manuscript to a friend, who’s going to make the final check for typos.

Yes! The satisfaction of ticking off that box!

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Although it was late and I was tired, I looked at the art supplies on the bench, and the template for the KBAA cover, and I felt this real wave of enthusiasm to get started. I applied the first background wash of watercolour. I didn’t go to bed till 1.30 a.m. yet I sprang up at six this morning! I’ll paint the next layers with water colour and add the bright gouache today.

This is what I have so far for the cover of KBAA.

KBAA, cover art, 2015

Getting to do something different creatively, to draw and paint, I realized is like taking a vacation.

It’s an artistic absence that is good for the soul. I’ve had about five hours sleep, and yet I feel utterly refreshed, energised and alive. I have a new skip in my step.

There is energy to be found in doing what you love.

There is definite wisdom in Kate’s advice, to focus on mastering one talent at a time. And there’s also something to be said for taking a break from focus and mastery, and allowing oneself to play and have fun!

One needs to be replenished in order to be fruitful.

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The whole anthology has such poignancy and meaning for all of us. It’s an honour to be involved. And when you’re busy putting out your own book, it’s nice to put your attention on someone else for a change.

Each writer contributing to the KBAA collection was invited to do an illustration or send a photo to accompany their piece. I can see an ink sketch in my mind’s eye. But I’m saving that for third on my list of priorities, once the cover is complete.

With the anthology and my debut novel due for release in the next four to five weeks, things are hotting up. If I occasionally fail to show up here, please mark it down to artistic absence. Either that or I’ve run away to be an artist!

How about you? Have you another creative outlet that gives you joy? Are you doing what replenishes your soul and restores you to fruitfulness?

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*Watch this space: release dates for, ‘The Or’in of Tane Mahuta,’ and, Kissed By An Angel, to be announced soon!*

From Chaos Central…

Yvette K. Carol

Keep Creating!

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After traditionally publishing a few, I switched and won’t go back. I love the control over my book’s destiny. Every choice is an act of love.  ~ D. Wallace Peach

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The best day of your life is the one on which you decide your life is your own. No apologies or excuses. No one to lean on, rely on, or blame. The gift is yours – it is an amazing journey – and you alone are responsible for the quality of it. This is the day your life really begins. ~ Bob Moawad

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