On 7th September, I will be attempting to complete the Three Peaks Challenge in under 24 hours for Sturge Weber UK.

I am doing this to raise money for a charity that is very personal to me, but also to raise awareness of the condition that my son Leo was unfortunately diagnosed with.

The three mountains are:

Ben Nevis, in Scotland (1345m)

Scafell Pike, in England (978m)

Snowdon, in Wales (1085m)

https://www.threepeakschallenge.uk/national-three-peaks-challenge/

Sturge Weber Syndrome is a rare neurological disorder, that at first appeared simply to be a birthmark on Leo's face, but actually turned out to be more serious than we could have imagined. Due to a lack of awareness of this condition, even the doctors at the hospital knew nothing about it, to the point they even informed us that the birth mark on his face would likely fade with time and we had nothing to worry about.

After having researched this ourselves, we discovered that his port wine stain birthmark is not something that will fade, but something that gets worse over time without treatment. Having had it lasered several times under general anaesthetic this has become lighter, but due to the position of it across his eye and head, there was risk that this could also be present on his brain.

As it turns out this was the case for Leo, he was found to have bi-lateral angiomas on his brain, meaning the blood vessels on both the right and left side were affected. This limits the blood flow and causes seizures, for which Leo now requires daily medication to keep at bay as best we can.

At the age of 6 months Leo had his first seizure and he was admitted to GOSH where It took 8 days of trying different medications, tests and treatments to finally get these under control so he could return home. His new medications then kept them 'under control' for while.

unfortunately at 16 months the same thing again and he was admitted to hospital for another week, and due to his age now the effects of these seizures were starting to become more apparent. As the seizures were coming from the right side of his brain, Leo lost the use of the left side of his body. This took some time to return and the prolonged weakness to his left side affected his ability to crawl and walk. We also became more aware of his learning difficulties, and in this time he was also diagnosed with autism and ADHD, which is quite common in children with Sturge Weber. The combination of these 3 together certainly provides a tough challenge on a daily basis, not just for Leo, but also for the rest of the family.

2 weeks before our wedding in 2021, Leo was admitted to hospital again with uncontrollable seizures. At our local, hospital due to the lack of knowledge of this condition, this was treated as epilepsy and one seizure was allowed to last 5 hours. With Sturge Weber, unlike epilepsy, all this time more damage was being done to Leo’s brain as it was starved of oxygen, and eventually he was intubated and transferred to London where he spent 2 days in a medically induced coma. When he was woken up, everything he had ever learned had been forgotten and the little boy we knew was gone. He had effectively returned the being a baby in a young boy's body, which was heart breaking to see.

Only in recent months we think he has returned to the level he was before this episode. We are so proud of him and how he is managing to overcome these hurdles. He turned 7 in July, and although still not able to hold a conversation, he is learning more words every week and his understanding of what is asked of him is coming on leaps and bounds. He is now out of nappies which is something we once thought may never happen, and due to his amazing special needs school is making progress all the time. That being said, the worry remains that a setback could happen again at any time.

I hope our experience will one day become something that no one else has to go through, and the work of Sturge Weber UK is trying to make this possible.

Therefore any donation to this cause will help to achieve this, no matter how small. Thanks for reading, and sorry I went on a bit :-)

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Sturge Weber UK inspires to promote research and share knowledge to empower individuals diagnosed with Sturge Weber Syndrome and their families and carers. Giving strength to create a supportive, inclusive and caring community whilst raising both public and professional awareness.