My wife and I are raising money for Tuberous Sclerosis Association. We are holding a charity evening on the 26th February 2022 and I am running the Manchester Marathon. A couple of kind individuals wanted to donate some money rather than attend the charity evening and therefore we have set up this just giving page.

This charity is close to our hearts as our daughter was born in March 2016 with the condition. In October 2016 she was admitted to hospital where she was diagnosed with Tuberous Sclerosis Complex (TSC) and a complex form of epilepsy. TSC can affect a number of vital organs. Elsie has tubers in her brain, had a previous mass on her heart and has cysts in her kidneys.

We are very lucky and Elsie is mainly at her developmental age although does struggle at school. She struggles with sleeping, her mood can be very hit and miss and she remains to have seizures. Unfortunately her seizures are now drug resistant. She has tried several epileptic drugs and remains to have a least 1 seizure a day. We have explored surgery as an attempt to provide her with a more normal life although at present this is not an option due to the significant amount of brain that they would have to remove. Despite this Elsie is amazing and she loves life. Life has been very challenging with her but we would be lost without her.

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....

Thank you. Jamie xxxxx