jamie's page

Tuberous Sclerosis Complex is a genetic condition that can lead to non cancerous tumours in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. The impact of TSC varies considerably, with some people being relatively mildly affected (they may not even know they have TSC) and others being more significantly affected.

 Before we had our daughter, Elsie, we knew nothing about the condition.Elsie was born in March 2016, everything went as planned and we left the hospital the same day. She was a difficult baby, she cried a lot andstruggle to settle but we did not really think much of it until she started doing these odd movements. We went to the doctors several times and they could not find anything wrong with her, the odd movements increased and her mood became worse - she would scream all day/ night and hardly slept. Eventually went to A&E and remained in Hospital for 7 days after this Elsie was diagnosed with 'infantile spasms' on our first night and sent for an EEG the next day which confirmed this. We were then informed that they thought Elsie had Tuberous Sclerosis Complex although would need to confirm this with a genetic test. We were informed that it was highly likely that Elsie would not have a normal life and due to the spasms would have some form of disability. Luckily for us, up to now Elsie has reached all her milestones and currently lives a pretty normal life. She is affected with an epileptic condition called infantile spasms and they believe itis likely she will develop another form of epilepsy at some point in her life. She also has a tumour on her heart - but this causes her no problems. Unfortunately no one can tell us how she will be affected in the future but she will be monitored continuously to check for occurring issues.

We are raising money for TSA to raise awareness about the condition and with the help of your money you could support others who are affected by this condition. All funds raised will go towards supporting families affected by Tuberous Sclerosis Complex, raising awareness of the condition and funding research to find a cure.

For more information on the condition and what they charity does please visit the website below:
www.tuberous-sclerosis.org