On Sunday 13 September, I’m going to be fulfilling a lifelong dream by taking part in the Great North Run, and at the same time raising money for our gorgeous youngest son, Thomas.

Compared to what this little boy has had to contend with in his life so far, running a half marathon should be a piece of cake! Any pennies you can spare for this great cause would be greatly appreciated.

Mine and David’s worlds nearly collapsed when our fears were confirmed in February 2012 that Thomas was having seizures. In fact, he was diagnosed with a very rare and damaging form of childhood epilepsy, caused by Tuberous Sclerosis Complex (TSC), a rare genetic condition that can lead to growths in various organs in the body.

There are around 1 million people around the world with TS, and every month an estimated 10 babies in the UK are born with the condition. Everyone is affected differently; Thomas has tubers in his brain, which have caused epilepsy and significant developmental delay. He is four years old and is non-verbal, has autistic tendencies and sensory processing disorder, and has to take medication every single day to help control his seizures. He attends the local special school where they have access to all the kinds of people Thomas needs to help him fulfil his potential (speech therapists, physiotherapists, occupational therapists to name but a few).

The world suddenly seems like a very lonely and bleak place when you are given that kind of news. Thankfully, we found the Tuberous Sclerosis Association, and they’ve been superb. They helped us better understand Thomas’s condition and all the associated medical issues, and importantly introduced us to a network of people in the same boat as us. Some of these people have become dear friends, and are always a great support to us.

The charity is also doing some great work in lobbying Parliament and the NHS to improve access to drug treatments for people with TSC.

So, thanks in part to the charity, some incredible support from our family and friends (old and new), and also the clinical trial that Thomas is fortunate enough to have been accepted on, the little man is doing very well. His seizures are under much better control (down from five per day) and he is as happy and cheeky as any other four year old. He may have TS, but TS doesn’t have Thomas!

Thank you xx

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