Sarah has set up a JustGiving page for her son Thomas, as he is taking part in Rainbow Run on Saturday 15 June.
She tells us about her son's condition, and what taking part in this event means to him.
"On 15th June we're all taking part in the Rainbow Run to raise money for Children's Hospice South West (CHSW) by way of saying thank you to them for all of their unwavering support over the last few years.
I thought it would be poignant to take part in their 10 year anniversary run in the same year that Thomas turns 10 to mark the 'light at the end of our tunnel' following Thomas' brain surgery.
Thomas suffered a stroke around birth which caused him to be partially sighted, have cerebral palsy and have complex epilepsy, which in his case was the potentially life limiting epilepsy West Syndrome.
Unfortunately this then progressed into a rare drug resistant epilepsy called Lennox-Gastaux Syndrome just as Lockdown hit us. Fast forward to November 2023 when we received the phone call from Bristol children's hospital that every parent dreads, explaining that he was life threateningly poorly.
Thomas' condition had deteriorated and the burden on his brain because of almost constant seizures was too much for him. He was at definite risk of SUDEP (Sudden Unexpected Death in Epilepsy) and was classed as the highest priority to have major brain surgery to disconnect one side of his brain permanently as soon as possible (a hemispherotomy).
Early on the morning of December 8th 2023 I signed the papers to allow surgeons to permanently stop one half of Thomas' brain in the hope it would save his life and then I watched him as he was wheeled down to theatre, not knowing for definite what his outcome would be.
Little Harbour children's hospice have been a massive support throughout our time with them, but came into their own during this massive crisis in our lives. If Thomas' operation has been successful, then we'll be discharged from their support sometime in the future, and if it hasn't worked, they'll continue to support us.
Either way we would like to give back a little bit to them. We need to raise just £70 to take part and so every small donation would have a massive impact to help us reach our goal.
The Rainbow Run would have been impossible for Thomas to take part in pre-op due to huge fatigue levels and constant seizures. In addition to this Thomas had to learn to walk again after his operation, which was just a few months ago, so this will be a massive achievement for him.
After all he's been through, what a milestone this will be in his recovery journey! I really feel/hope that this run might actually be achievable for him now...plus Thomas really wants to have paint thrown at him as he runs!
Thanks so much for spending time to read our story and also for any help you're able to give towards this cause: Sarah Phillips is fundraising for Children's Hospice South West (justgiving.com)