Limerick mother, Laura Enright walking 100km to raise funds and awareness for TSC Ireland
Limerick mother, Laura Enright is walking 100km asking people to “Please support our daughter Matilda and many families like ours living with Tuberous Sclerosis Complex”
A County Limerick mother is walking 100km of The Camino Way this April to raise funds for Tuberous Sclerosis Complex (TSC) Ireland to support her daughter and families living with TSC.
“Please support our daughter Matilda and many families like ours living with Tuberous Sclerosis Complex by donating and raising awareness,” Laura Enright writes on an iDonate page which has so far raised more than €10,000 of its €12,000 target.
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 tumours 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, and 90 per cent of individuals with Tuberous Sclerosis Complex have epilepsy, which is often very difficult to manage, and 50 per cent also have autism.
Currently on the trail, Laura has been updating her followers on Instagram while raising awareness of TSC in her posts explaining, “Imagine receiving a diagnosis of Tuberous Sclerosis Complex, a rare genetic disorder, then receiving a diagnosis of epilepsy. And statistically being told that it will be a very difficult condition of epilepsy to manage, it will be resistant to treatment for many options available to you. And that you are very likely to have a very frequent presentation of seizures, of varying types and very often have daily seizures.
“Then imagine, you may receive a diagnosis of Autism, then imagine you receive a diagnosis that you may have tumours growing on your heart, that you have skin manifestations of Tuberous Sclerosis Complex. Then imagine, that you’re going to have routine surveillance through MRIs on your brain, your kidneys, scans of your lungs, to ensure a version of tumours aren’t growing on them organs.
“This is a very common presentation of Tuberous Sclerosis Complex. It is a very difficult disease, it needs coordinated care. Ireland does not have a Tuberous Sclerosis clinic despite it being the international gold standard around how to coordinate care for people with Tuberous Sclerosis Complex,” said the Limerick woman.
Laura asked for followers to “Please help raise awareness” for the needs of people with TSC in Ireland, calling for people to notify their politicians and asking people to “share, share, share”.