In October 2022 we welcomed our baby boy into the world, completely unaware that 6 months later our lives would be turned upside down.

In May 2023, Jonah started to have seizures and was admitted to hospital for tests. An EEG confirmed epileptic activity and an MRI scan revealed multiple tumours on Jonahs brain, leading to his diagnosis of Tuberous Sclerosis Complex (TSC2).

TSC is a rare genetic condition that causes benign tumours to grow in various organs of the body, mainly effecting the brain, heart, kidneys, lungs, eyes and skin. It can also cause physical disability and mental impairment. The severity of TSC can vary massively from person to person, it all depends on the size of the tumours and whereabouts they grow in the body. It's difficult not knowing how severely Jonah will be affected in the future, but we try not to let that stop us enjoying the here and now.

There’s currently no cure for TSC but there are treatments for some of the problems it causes. Jonah has epilepsy as part of his condition and is unfortunately drug-resistant. He takes medication to try help minimise seizures but still has them daily. We attend regular appointments to keep a close eye on any tumour growth and just have to take things one appointment at a time.

Jonah is such a happy little boy and gets cheekier by the day! He loves nothing more than running around with his big sister causing chaos.

We can’t take TSC away from Jonah but we can stay positive for him and be with him every step of the way.

We're determined to raise as much money as we can for the Tuberous Sclerosis Association, a charity close to our hearts. The TSA provide much needed support to those affected by the disease and dedicate themselves to finding a cure.

So far as a family we have managed to raise over £20,000 for the TSA across various events including; sponsored hike, fun day, raffles and Aarons physical challenges – the London marathon, Iron man 70.3, 127 mile non-stop Leeds to Liverpool canal walk. And he has plenty more planned for 2026!

We would like to say a massive thank you to everyone who has supported us on our journey so far 💚