09 September 2013

Appearance diversity: Ashton's story - a little boy with Sturge Weber syndrome."We're happy to explain and educate but it's people's rudeness that really bothers us."

A little while ago I was tweeted at by Ashely Ide, a British man, raising awareness about visible difference. His son Ashton, has Sturge-Weber syndrome - which means he has a large birthmark to 85% of his face. This syndrome also causes seizures.

Ashley has written a book to educate children about visible differences - you can find out more on the What's That on Your Face? facebook page and consider donating to his cause to get the book published. What a wonderful gift from father to son!

Here's Ashton's story, as written by Ashley:

Picture of Ashton, young boy with Sturge Weber syndrome

"On the 26th November 2007 I became a dad and had a beautiful little boy, he took a while to come into the world and caused his mum a lot of pain, we was delivered by ventouse and had extensive bruising.....or so we thought, however that bruising later turned out to be a birthmark, we were obviously devastated as you expect your little bundle of joy to be perfect, he had an extensive birthmark that covered more than 85% of his face and head.

We were reassured by the paediatrician after they told us there could be conditions related to the birthmark but these were very rare.

We later learned that Ashton was born with Sturge-Weber syndrome a rare neurological condition characterised by a facial port wine stan (birthmark) it is thought 1 in 50,000 get Sturge-Weber syndrome (SWS) however diagnosis varies for each individual due to the lack of awareness of the syndrome. Ashton's was picked up early and diagnosed at 2 months old after an MRI scan, many others go undetected until the onset of seizures.

SWS is a progressive syndrome and comes with an array of disabilities, glaucoma, epilepsy and learning delay are among the most common, paralysis and reflux and mini strokes are also among these, it is unpredictable as each child is different and severity varies.

Ashton started his seizures at 2 1/2 years old although he did have vacant episodes before this, he is on epileptic medication which keeps the majority of seizures at bay however he has had 2 episodes of status epileptics lasting more than 2 1/2 hours and 4 hours which has been very scary, he attends great ormond street hospital for the SWS clinic and as he has glaucoma in his right eye which he has had an operation on to prevent him losing his sight, he has daily eye drops to keep the high pressures down, and they are closely monitored.

Up until Ashton's recent 4 hour seizure he has not had any lasting affects, however he now has a slight weakness and lack of gross motor and fine motor skills in his left hand side, this can be challenging for Ashton during sports and class work as his coordination is not great and becomes tired faster, his seizures seem to be controlled at the moment but we know with the condition that its progressive and it's a matter of time before the next seizure occurs, he has small seizure quite regular but we control these with his rescue meds which have thankfully worked for him.

Ashton has recently had many vacant spells and is struggling through school, he becomes very lethargic with his condition especially when he's having periods of clusters of seizures.

Ashton has always been very confident regarding his birthmark but we have always noticed stares and people always make rude comments or ask what's that on his face, we have also had people ask how has he burnt his face? Who hit him to make him all bruised and why didn't you put sun cream on him? We don't mind people asking us about Ashton and what's on his face, we're happy to explain and educate but its people's rudeness that really bothers us.

Ashton started to have laser treatment on his face when he was two years old which was advised as the birthmark can grow and become tumorous and blotchy, it's a quick procedure under general anaesthetic but leaves very prominent bruising in the shape of small circles on your face, Ashton calls these his cheetah spots and they make him run faster, he definitely receives a lot more attention and stares after he's had this but it's never bothered him until recently.

Picture of Ashton, young boy with Sturge Weber syndrome

Ashton started school in 2012 and this is when we noticed a difference in Ashton and that he was more aware of his appearance, he has made comments about people calling him names and talking about his birthmark, we have always encouraged Ashton to be open and tell his friends what it is and he now does, he also tells them after laser surgery he gets special cheetah spots and they make him run faster, his friends live this and think its great.

He still gets the odd child make fun but he knows to ignore them because they don't understand. We have worked close with his school to educate the children about facial differences.

Ashton has inspired me to educate children about facial differences and to raise more awareness and acceptance, I have written a children book called "What's that on your face?" about a boy with a facial birthmark and his first day at school. It's inspired by my son and his experiences, and is a fun engaging story that emphasises that everyone is unique and special in their own ways.

I'm working with a fantastic illustrator Jo Larsen-Burnett who has been doing some great promotional drawing for my book. She has an amazing imagination and some fantastic ideas as you can see below from her work.

Illustration of children's book about visible difference
Illustration of children's book about visible difference
Illustration of children's book about visible difference

My aim is to get this book into as many schools as possible to raise awareness and educate children to accept differences and emphasise that everyone is unique. I also want it to be used and recommend by healthcare professionals to help families and children's siblings understand more.

The book includes a girl that is blind and a very different kind of teacher and a ginger boy with freckles, but I would love to expand on this book and create a series to cover more conditions and syndromes to raise more awareness."

Collage featuring children with visible differences

For appearance diversity resources, visit my resources page. If you'd like your appearance diversity story featured on my blog, contact me.



1 comment:

  1. Glad to read about your son's experience with this, and the illustrations are wonderful. A little boy with so much love will be a great guy!


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