Olivia was diagnosed with Tuberous Sclerosis Complex when she was just 9 months old. What started off a seizures has turned into so much more. 

(Tuberous Sclerosis Complex is a rare genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body. The tumours most often affect the brain, skin, kidneys, heart, eyes and lungs.)  Olivia is effected in all aspects of the above and with the tumours come complications. Olivias main being epilepsy, which has been diagnosed as Lennox-Gastout Syndrome which in an easy term is uncontrollable, drug resistant epilepsy.  

Olivia’s organs are covered in tumours causing not just the epilepsy but high blood pressure, polycystic kidney disease, potential heart failure as she gets older,  Speech  and language delay, global development delay, potential ASD, sensory processing disorder. 

Nothing ever gets Olivia down and she takes it all her stride. Olivia is 3 years old and copes immensely well with it all! She has a tube for her medication as she refuses to take it orally and there a lot of it to go down daily!  She’s also often fed by the tube due to lack of interest in her food. 

Olivia has recently had surgery to have a vagus nerve stimulator (VNS) fitted. A VNS is a device used to treat seizures when seizure drugs are not effective and surgery is not possible. VNS consists of a pacemaker-like generator that is implanted in the chest wall and is programmed by the physician to stimulate the vagus nerve in the neck.

We are fundraising for the Holly Ward at Hinchingbrooke hospital in Huntingdon which is our local hospital. We spend a lot of time there and often weeks at a time. It’s like home from home! They deserve the fundraising as the ward is so lovely! The money would be used for toys, ward pushchairs/buggies and special seats. Nothing is ever to much of an ask!

Please help us, help them!!  

Please do Follow Olivia on Facebook and Instagram!! 

Olivias journey with tuberous sclerosis Complex