My son Samuel (age 9) is running the Mini London Marathon for our friend’s little boy, Alexander, who is a happy 5-year-old who has cerebral palsy, dystonia, and epilepsy.

He enjoys being out and about and going to school.

That’s him in a nutshell, but here is a bit more of his story!

Alexander decided to arrive at 24 weeks while our friends were on holiday in Mallorca!

They were eventually repatriated back to the UK after 9.5 weeks. He stayed in hospital for another 6.5 weeks, and then they finally came home!

All was going well until, at 9 months old, he developed infantile spasms, which is a rare form of epilepsy that causes developmental delays.

They stayed in hospital for a month while they tried to gain control, and they did have a brief spell in remission, only for Alex to relapse again a couple of months later.

They tried various drugs, but none worked, so they tried the ketogenic diet, which helped him enormously. He went from over 300 spasms a day to none! This had a huge impact on Alexander, as now he can focus on enjoying school and his activities.

Our friends have now weaned him off keto and are trying to keep his epilepsy under control with medication.

However, Alex has another challenge that is impacting him: dystonia. It is getting worse and is limiting the little mobility he has. His left hip has become dislocated due to his muscles pulling it out. This is making sitting difficult for Alex, and they are trying to find ways to make him comfortable and ease his dystonia.

As he gets bigger, our friends are finding more things he needs or therapies that may help him.This is why we want to fundraise for him. We want to be able to help him and the family as much as possible now and in the future for whatever he may need!

If you are able to help, it would be amazing, as no one knows what the future holds, but we do know we want to do everything we can to make it more comfortable and enjoyable for him and the family.

Thanks for reading, please donate if you can.