Lynne Murton and Seth


I became a member of the TSA shortly after my son Seth was diagnosed at 4 months in 2003. I needed to find out all that I could about this condition, which I had never heard of before. 
 
For the first couple of years or so I didn’t have much contact with the TSA, only to look up the website for information. 
 
I then decided I would like to do something for the charity, both to raise funds and awareness of TSC, so I spoke to Ann Carter, then head of fundraising, and agreed to become the local representative and to organise a Charity Ball. 
 
This was something I had never undertaken before, however I like a challenge! After months of planning, and miles of walking, the ball went ahead in 2008, at the Ramada Hotel Belfast. 
 
I was nervous and anxious right up until the big night, as there was talk of cancelling, but I had put so much hard work, energy, and money into it that I wasn’t prepared to let this happen. 
 
The night was a great success and well attended, raising in the region of £16000 for the TSA, I was absolutely delighted. 
 
A couple of years later I organised an abseil down the Europa Hotel in Belfast, again to raise funds for the TSA. 
 
I am terrified of heights, so again liking a challenge, thought this would be a good way to fundraise, and organised it for the day the TSA was holding a conference in the Europa, that way I couldn’t back out, I couldn’t let myself down in front everyone attending the conference! So down I went, with my mother and my friend, my daughter was also going to do it but unfortunately had a mishap at the top and was unable to do it. 
 
I had set a target of £1000 but actually raised just over £2000, which was fantastic. 
 
The TSA has helped me in a number of ways, firstly, with running the TS clinic.  
 
If it weren’t for Dr Shepard and his team at the clinic, we would not have access Everolimus for Seth, and we cant thank them enough for that. 
 
The clinic has also been a great support for us, someone to discuss the various aspects of TSC, how they affect Seth, and reassure us that we are doing the right things for him, like friends that we can talk to who understand the world of TSC. They are also a central point to organise the various professionals involved in Seths care.  
 
We are very grateful to the TSA, if it were not for them and their research, we wouldn’t have Everolimus, which we describe as the closet thing to a cure for TSC as it has changed our lives, by helping to get Seth almost seizure-free, which we were told he would never be.  
 
It also seems to have a positive effect on his Autism, meaning less frequent meltdowns, better general behaviour and him actually leaving the house! 
 
I know that the TSA is always there, in the background, working away to make the lives of those affected by TSC better, and to be a support in times of crisis, a listening ear when needed. 
 
Although I have only met a few people from the TSA, and people affected with TSC here in Ireland, I feel that we are a large family, always here for one another, connected by our understanding of this hateful condition and our love for those who suffer with it. 
 
Thank you to all those involved in the TSA both past and present, for your commitment. 
 
Here’s to the next 40 years of the TSC, and many more.