Dad on a mission for son with TSC

On 25th 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 we noticed that Jonah kept heavily blinking, a bit like a startle reflex but for no apparent reason. The blinking then turned into clusters of head drops and eye rolls and Jonah 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 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 effected 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’s already football mad and loves nothing more than running around with his big sister causing chaos. We nick-name him ‘wreck-it ralph’ because he loves to bash everything doesn’t know his own strength!

We can’t take TSC away from Jonah but we can stay positive for him and hold his hand every step of the way. He’s got this…. WE’VE got this.

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

In addition to our family fundraising efforts for the TSA so far (over £4,000), I also wanted to set myself some personal challenges ………

I'm a Dad on a mission!

My aim is to complete ten 10Ks in 2024 alongside 2 half marathons and a 127 mile long walk covering the length of the Leeds and Liverpool canal without stopping.

Upcoming events -

• FEBRUARY 18th - half marathon 13.1 miles (Blackpool)

• MARCH 10th – 10K run (Chester)

• APRIL 7th – 10K run (Fleetwood)

• APRIL 21st -10K run (Wrexham)

• MAY 12th – 10K run (Blackpool)

• MAY 26th – 10K run (Manchester)

• JUNE 2nd - 10K run (Morecambe)

• JUNE 22-23rd – 127 walk (length of the Leeds and Liverpool canal)

• AUG 17th - 10K Night light run (Blackpool)

• SEPT 22nd - 10K run (Warrington)

• OCT 13th - Half Marathon 13.1 miles (Manchester)

More events to be added…….. watch this space!