We joined the TSA some 26 years ago whe n our son Matthew was diagnosed at almost five. Of course this was all pre internet days and our letter of application was answered by a Janet Medcalfe. It was a lovely letter and made us feel we were not the only ones to be in this ‘club’. Janet was the first, and at that time a volunteer Head of Support Services and along with Anne Carter and Ann Hunt, was the organisation’s voluntary ‘backbone’, providing the care and support to families; Ann Hunt developing the research and Anne Carter going about raising the monies to keep it all happening. They did more than a splendid job – they were exceptional individuals. It was my privilege to have known them so well.
The first event we attended was the AGM held at the Boiler Makers Institute in Manchester. I was very worried what we would learn but actually the fact is you need that knowledge to enable you to help your child. And that has been our mantra over the years – you need to be able to steer the ship! So when Janet approached me to join the trustee board I jumped at the opportunity to learn more and here I still am some 25 years later. During this time I have been the minute ’s secretary , chair of the Support Services Committee, a member of Finance Committee and the Chairman.
I did not want this role, but Janet had just been diagnosed with terminal cancer and she and Ann Hunt encouraged me to accept. It was a time of change, we had lost Janet, our ‘go to person’ and I of course had lost my mentor. But I remained in that position for just over 4 years. However, having handed over the Chair baton I have now become President – a role similar to that of the queen, ie I have no powers but can advise a nd the advised can choose to accept or decline!
When you have a child with TSC you become a member of a club you never wanted to join but joined you have and because of the nature of the condition – it’ s not going to go away - there will always be a relationship with the TSA. I have great faith that this organisation will be there to support the likes of us and others in that same club over the next 40 years.
There have been many stories and events about which I could tell you but I have chosen our trip to Downing Street in 2001, just after 9/11 when Tony Blair was Prime Minister. This was written for Matthew’s (then ) school magazine.
The postman brought the invitation in September. Matthew and I had been invited to 10 Downing Street to have tea with Cherie Booth - that’s Mrs. Blair. But we were told not to say anything to anybody because of ‘security reasons’!! We tried hard not to tell too many people.
We travelled down to London on the 11o’clock train from Leeds - we had to be at Downing Street by 4.30pm so we had plenty of time. The train journey was very good and it was quite a nice day so we could look at the lovely autumn scenes as we made our way south. For our lunch we had a picnic on the train.
Luckily, we were sat at a table and despite the man sat facing us having what seemed to be the contents of the whole of his desk in front of him, we managed without any accidents. When we got to London a friend met us and we got a black London cab to take us to Hackney, where we were stopping for the night. After a quick cup of tea and a bite to eat we got changed. The invitation had said ‘lounge suits’ at the bottom - that means you don’t go in jeans and sweatshirts but something a little smarter.
Matthew had a lovely new lavender coloured shirt and a very swish waistcoat that he had wor n to a posh wedding earlier in the year. He looked very smart. We then travelled by the no.55 bus which took us through the City of London where the Bank of England is and past St. Paul’s Cathedral. When we got off we had a little walk and a breath of fresh air before we met up with the other members of the group waiting at a hotel nearby.
We walked the short distance to 10 Downing Street and had to go through all the security checks that are now necessary. We had to go through the metal detector and have our bags searched and this was before we got to the front door. But then-the door opened and a lovely smiling policeman in his shirt sleeves was there to welcome us in. Matthew couldn’t wait - I think he wanted his tea - and managed to zoom in yards ahead of me. He wasn’t bothered whether it was Mr. & Mrs. Blair’s house or not!
When you see the television pictures of the house you think it’s just like any other ordinary house don’t you? Well it is much, much bigger than you would imagine for a start. Behind the front door is a big square entrance lobby with a corridor going straight off. There are two big lifts down there but we were not allowed any further that way. (It is probably just offices anyway.). But we went down another corridor to another room with lots of very beautiful painting on the wails. Then up the stairs - the ones you see on the TV with all the pictures of the past prime ministers on the walls.
You’re then on the 1st floor and in what are called the ‘State Apartments’ - that’s because the Prime Minister and his family don’t use these rooms to actually live in. When they have to entertain people or have conferences these are the rooms that are used. The ceilings are very high - much higher than in most houses - and are beautifully carved and decorated with gold paint. There are three very large rooms, one with wooden panelling around the walls, one painted in a sort of reddish colour and the other in a pale yellow.
We were in the yellow room. There were lots of lovely paintings on the walls and the furniture was very nice but because it wasn’t somewhere to sit and watch the television, there wasn’t a settee or any easy chair s. The tables had marble tops (I suppose that makes cleaning up easier). The curtains were from floor to ceiling and Fiona - a young girl who was with us thought they made a super place to hide behind! There was a flower display on one table that would have filled most people’s front rooms!
When we went into the yellow room there were waiters at the doors (great big double ones) serving wine and soft drinks like Coke and orange juice. Then waitress brought the ‘tea’ - very small sandwiches cut like triangles, and other small things like kebabs and the smallest burger that you have ever seen - about the size of a £2 coin, and they had sauce on! Matthew really didn’t think much to them, I think he would have preferred beans on toast to be honest. But the adults thought that it was very nice and the wine was good!!
There were a few tall men around that weren’t waiters - just sort of coming and going occasionally. We decided that they were security’. Plain clothes policemen.
Mrs. Blair came down from their flat, that’s on the second floor and I suppose it’s a bit like a very big attic! I bet they get a very good view from up there - the windows looked over Horse Guards Parade if any of you have been there. They will be able to see the Changing of the Guard really well.
She brought the baby - Leo, with her - and his nanny! He’s about 18 months old now and he really enjoyed playing with some of the little children that were with us. I don’t suppose he sees very many children in Downing Street! She managed to have a word with most of us and seemed very interested in Tuberous Sclerosis. She gave a very nice speech at the end and told us to have a really good look round. I think she enjoys having visitors and at least she doesn’t have to make sure the bedroo ms are tidy and the beds made before they arrive.
Someone saw Mr. Blair, who said ‘hello’ and ‘were we enjoying ourselves’? He was waiting for his car to take him to see the Queen - he generally goes once a week to give her a report on what’s happening - perhaps she hasn’t got a telly!
At the end of the visit we had some photographs taken outside with the policeman and then we hopped on a bus to look at the Christmas light in Oxford Street and then back to Hackney where we had our proper tea - a big jacket potato with beans and cheese!
It was an exciting 24 hours and a day not to forget.