Please support our daughter Matilda and ,many families like ours living with Tuberous Sclerosis Complex  by donating and raising awareness . 

Tuberous Sclerosis Complex is a rare genetic disorder which causes benign tumours to grow throughout the body. An individual with Tuberous Sclerosis Complex is missing part of the gene that regulates how their cells grow. 

As a result benign tumour's can then grow in the brain, eyes, heart, kidney, lungs, skin and other organs. An individual may be born with tumours or develop them during their lifetime. 

There are approximately 6 children born in Ireland with Tuberous Sclerosis Complex every year .

Up to 90% of individual’s with Tuberous Sclerosis Complex have epilepsy which is often very difficult to manage.

Up to 50% of individuals with Tuberous Sclerosis Complex  also have autism . 

There are also neuropsychiatric conditions associated with the disease such as neurobehavioural difficulties.

Tuberous Sclerosis Complex   can also impact a child’s development and some children will have intellectual disabilities. 

Due to the multiple organs involved there is a need for very regular surveillance and individual’s have a catalogue of appointments they need to attend .

The burden of disease for the individual and the family can be huge . Currently there are no Tuberous Sclerosis Complex specialised clinics in Ireland. Tuberous Sclerosis Complex clinic can play a vital role in improving the lives of  people with Tuberous Sclerosis Complex  .

Tuberous Sclerosis Complex Ireland is an Irish Support Group to create awareness of Tuberous Sclerosis Complex .

I am walking 100 km on The Camino trail in April to raise awareness and funds to help support individuals and families impacted by  TSC .