In September 2023, just before Hattie’s 1st birthday she was diagnosed with Epilepsy. Hattie had undergone various scans, from EEG’s to MRIs.

These tests confirmed she has epilepsy and Focal Dysplasia, along with a calcified cyst on her brain.

Following these results, her Epilepsy consultant had her results reviewed by a Neurologist at Bristol Children’s Hospital, who advised that Hattie could have the rare genetics disease, Tuberous Sclerosis Complex (TSC) and that Hattie should under go genetics testing.

The genetics testing took place in February 2024 and we had the results back in April 2024, which showed she has TSC.

Hattie then under went scans on her eyes and kidney to ensure they were free of cysts/growths, these all came back clear, but she will have regular tests on her kidney, heart, eyes & brain for the rest of her life.

As you can imagine this was a huge shock to us, as we had never heard of TSC before, but we received lots of information and were given the details of TSA who provide care and support to those living or caring for those with TSC.

Hattie is doing really well, she has good days and bad days, but she is a true little fighter. Sadly there is no cure for TSA, and we don’t know what Hattie’s outlook will be for the future, but we will always be there to support her along the way.

So, on the 26th April 2026 I will be completing my biggest challenge to date the London Marathon! This is set the be one of the most emotional challenges I’ve ever experienced!

We will be raising as much money as we can for The Tuberous Sclerosis Association so they can continue to support families like ours.

We would be so grateful for any donations big or small.

Did you know…..

The Tuberous Sclerosis Association (TSA) is the only UK charity dedicated to supporting people affected by Tuberous Sclerosis Complex (TSC). TSC is a genetic condition that can lead to growths in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. When they cause problems it is mainly because of their size and where they are in the body.

By supporting me with a vital donation you can be a part of the TSA’s life-changing work....