Blessed Trinity student Alice is trying to take her campaign for TSC sufferers to get medical treatment on the NHS to parliament.
Alice, 15, launched a petition as her eight-year-old brother, William, along with some of her friends, suffer from Tuberous Sclerosis Complex and she has seen the challenges they face.
One of them is a rash on their cheeks and nose caused by legions and she wants a cream which could help this available for free on the NHS.
“Tuberous Sclerosis Complex is a rare genetic condition which one in 6,000 are born with and the condition has no cure,” said Alice, who has a younger sister as well.
“My brother deals with TSC, autism and epilepsy as well as obsessive compulsive disorder which is interlinked with his autism. He cannot read or write.
“Sufferers of TSC have to have endless medication which can have side effects, such as affecting the heart, brain, kidneys, skin and eye.
“Furthermore TSC can cause learning disabilities, such as ADHD and autism.
“I started my campaign two years ago as I saw the challenges my brother and other people have faced with not having the medication or treatment given for free on the NHS, especially wiith the side effects
“My brother has fits, has obsessive compulsive disorder and is obsessed by hoovering and he likes trams. He has to know how long everything will take so it is hard to get out of the house. It can make life hard although we all work together.”
Alice is campaigning for the mTOR inhibitor cream to be given free on the NHS. Almost all children with TSC have some type of lesions on their skin and, as the child gets older, they can appear on their nose and cheeks which is obviously distressing because of their location.
“My brother has a rash on his face due to his TSC and Everolimus, or mTOR inhibitor cream, is not free but costs money which the government will not fund nor the NHS and there have been protests about this recently at the Houses of Parliament, with local MPs backing it,” said Alice.
“I want my brother to have the chance to lead as normal life as he can without people staring at him. It looks like acne, the rash is red and blotchy, and there was a boy on the tv programme ‘Born to Be Different’ who got the use of the medication and it helped his life. I want the same for my brother, I want him to have confidence to stand up and speak in front of people and not be judged because of his rash.
“I have started my own petition as I believe it’s important.”
Alice also wants to make sure that people in the education system understand TSC sufferers and has been in touch with the House of Commons for the next part of her battle.
“I am trying to get a meeting with the Head of Education Justine Greening ,as well as Lord Nash, MP Caroline Dinenage, the Parliamentary Under Secretary of State for Women, Equalities and Early Years at the Department for Education, and MP Edward Timpson, who is involved with education, as their roles all link into the education department.
“I want to hear their views on how teacher training and SENCO (Special Education Needs Co-ordinator) deal with people who suffer from TSC.
“I want to know how teachers are trained to deal with people with learning disabilities and then look at the education system, to allow a fair and equal system for everyone.”
Firstly though, Alice wants people to sign her petition for the NHS to provide mTOR inhibitor cream for free to TSC sufferers.
“It would mean the world to me if people signed this petition and the world to my brother as well. If he has access to more medication, he will be able to do so much more with his life and make a big difference to our lives as well."
"Everyone deserves the best chance.”