Jean Willson

It was desperation to find another family like ourselves, with a baby just diagnosed with Tuberous Sclerosis, that led us eventually in 1971 to find ‘In Touch’ This was a magazine that put parents ‘in touch’ with other parents whose children had a rare condition. Through this, I got in touch with Esher Galbraith in Scotland.  We wrote to each other, comparing our daughters Catriona and Victoria, both severely affected by TS. 

We poured our hearts out to each other, as there was, we felt only us in the UK with children like ours!  But then, Florrie Smith from Birmingham and then Anne Hunt from Oxford joined our pen-pal group.  The numbers then gradually grew over the years, and the letters turned into exercise books, where we each wrote something- what problem we faced and how we found solutions, and then passed it on. This was before email, mobiles, just snail mail, and I remember, these were dark difficult days.  

Getting the TS mag brightened my day, and I felt it eased the terrible isolation. We had a common bond, we loved our child and wanted the best, and became a mutually supportive tea with our words written from right from the heart. We four mums writing regularly to each other, sharing information, ideas and hope and this was the real beginning of the TSA. 

Our solidarity grew once Anne Hunt was on board.  She acted as the catalyst to unite us, and it was her drive and enthusiasm to physically get us together and plan becoming a charity and getting information out to other parents.  With her background and medical connections, she it initiated the first research into the TS condition – and look where this is leading us now! 

In 1977, with Anne we organised our first TSA Annual General meeting in London. My husband found graphic designers who produced our first logo and the TSA charity was born. I persuaded the then Spastics Society to give us a free room, but as the numbers rolled in, I decided to ask for a bigger space. 

They gave us the basement in their Regents Park office and I am glad we did, as over seventy people came from all round the country.  Norman remembers that two doctors began a heated argument about the TS condition, and took over the meeting.  Anne Hunt had to bring the meeting to order.  

The argument continued between them all day. But for us parents, we were so delighted to meet up with others with a common bond, and the hall was buzzing with talk.   My mum and mother-in-law made the sandwich lunch, and we to send out for more bread and fillings! It was here we learnt from our members that information about the condition was vital.  So, we went on to produce many leaflets to give out to parents to help them understand the complexity of the TSC.  

It was here that fundraising to find a cure was first mentioned.  Later Anne and Tom Carter found their forte and went on to raise huge amounts, whilst Janet Metcalf was the kind, re-assuring voice of TS at the end of the phone. Anne headed up the research, and inspired many professionals to take an active interest in the condition. Everyone volunteered their time and energy, whether it was fundraising, supporting people on the telephone, writing articles and most important of all offering mutual support to each other. 
During the 70/80s there was a lot to campaign about, and right from the start I became an activist. When Victoria was two, we took part in The Spastics Societies Save a Baby Campaign.  I was always very keen for the Tuberous Sclerosis condition to be mentioned, so when the TSA was formed, 

I always insisted its’ name be included, and the address where families could contact, so that they could get the vital information and support. Victoria and I took part in many films, TV interviews, articles, and campaigns for social justice for people with learning disabilities.  

Just two were in 1986 we did a TV Appeal for the TSA with Anne, myself, Norman and Victoria; in 1989, my family were featured on the HELP series illustrating the appalling lack of post 19 provision. This, I felt, was my way of supporting the TSA.   
 As the years went by, and my life became extremely busy, I was never so involved with the TSA organisation as I was in those first seven years, but I kept in touch and contributed when I could. As Victoria grew, we started to visit the TS Clinics based at St. Georges Hospital, Tooting, south London.  Here we found doctors who really understood the condition, and what we, as parents needed to know.  

They always gave us the truth, in ways that we could assimilate, and in turn, help Victoria. Chris Kingswood, particularly, informed and guided us, and was always there in the background, always ready to support us.  These clinics became are highly valued too by other parents as they really understand the complexities of the TSC, particularly behavioural difficulties, but still remained person centred when talking to our children. 

Working in the field of disability as a professional, I began to hear from others, particularly trusts and members of the medical profession, about the good the reputation of the TS organisation. We had grown into being highly valued and well respected as a sound, well-run organisation, “an excellent model of a voluntary organisation “This was from the Rank Trust. 

I am very proud that out of desperation, when just a few mums got together, formed life long bonds, and founded this very effective and much-loved organisation that the TSA has become.  And so, to the future, and my hopes are that we continue to support individuals and families, not only giving them hope and ways to cope, but responding to their needs and wishes. That we continue our research on prevention and ultimately find a cure.