In October 2022 we welcomed our baby boy Jonah into the world. After a very difficult time following his big sisters birth during the first Covid lockdown in 2020 we were very much looking forward to a different experience this time around. For the first 6 months we enjoyed being in our ‘baby bubble’ with absolutely no idea our lives were about to be turned upside down.

In May 2023 Jonah started to have a type of seizure called infantile spasms, he was admitted to the children’s ward at the Royal Blackburn hospital where he spent the next 9 days. 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 on a persons organs, 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.

In December 2024, Jonah went into status epilepticus (a term used to describe seizures lasting longer than 5 minutes). He seized for over 2 hours and was put into an induced coma and transferred to intensive care at Manchester childrens hospital. Jonah regressed significantly after this and it took over 4 weeks for him to make a full recovery. 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 TSC and takes medication to try and minimise his daily seizures. 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 & hulk-smashing everything in sight!

We can’t take TSC away from Jonah but we can stay positive for him and raise as much money as we can to help find a cure.

The Tuberous Sclerosis Association are a charity close to our hearts. They provide much needed support to those affected by Tuberous Sclerosis and dedicate themselves to finding a cure.

So far we’ve raised over £20,000 across various events including; sponsored hike, fun day, raffles and Aaron’s various physical challenges including the London Marathon & half Iron Man.

We would like to say a massive thank you for those who have supported our journey so far 💚