A brave Peterborough lad who lives with the risk of having a fatal seizure is waiting for a decision on whether he can have vital brain surgery,
Isaac Stimpson was born with Sturge Weber Syndrome (SWS), a rare condition that affects the development of blood vessels, causing abnormalities in the brain, skin, and eyes.
Most of the nine-year-old lad’s body is covered with a port-wine birthmark, including half of his face. The birthmark, caused by enlargement of the blood vessels, means Isaac has seizures on a weekly basis - in the past they have lasted more than three hours, with the Werrington boy being placed in a coma.
The condition affects half his brain - but now the healthy side of the brain has shown signs of causing seizures.
Mum Louise (35) said she was hopeful he would be able to have an operation soon.
She said: “He was born six weeks premature. On day four, when he was still in special care, doctors said the marks, which they originally said were down to bruising, was a birthmark, and that he may have a problem with his brain and eyes, and he would need to be seen at Great Ormond Street Hospital.
“As soon as you hear that, alarm bells start ringing.”
He was diagnosed with SWS, and glaucoma, which was connected to the condition.
Louise said: “When he was two months old, he had an ultrasound scan and surgery on his eye.
“He has more surgery looming on the eye, and we are waiting for the surgeon to come up with a plan for his brain.
“Its only in the past few months that there has been a problem with the healthy side of his brain.”
Since being diagnosed with the condition, Isaac has been prescribed a large amount of medication to try and control the seizures.
Louise said: “He is taking medication but it is not working - plan A hasn’t worked, so we are looking at plan B.”
Louise is now raising money for charity Young Epilepsy and has set up an online fundraising page. To donate to the campaign, visit: https://www.justgiving.com/fundraising/louise-stimpson2.
‘Thank you’ for Isaac’s special treat
Isaac was desperate to go trick or treating on Halloween. However, on October 31 he had respite care and was unable to go. But Louise said: “I put a post on Facebook asking if people would be able to have us trick or treating on the Wednesday. “We got so many sweets - we will be taking some of them to Great Ormond Street to share. I want to say a special thank you to Mandy at The Dragon Pub, Maya and Hira and the Werrington Convenience Store, Nina at Werrington Tesco, and Kevin from AMD Autos in Baston.”