Our daughter Georgina was
born in 1976 and diagnosed with TSC a few weeks after TSA had first meeting in London. She was 18 months old at the time. We were living in rural Somerset
and there the TSA had these baby magazines in circulation – they were school exercise books in which people wrote their own items about their child and
then posted it on to another person in the group, who would then add their own information. It was so important because you didn't feel like you were the
only people in the world to have to deal with this thing.
Janet and I went to the next meeting and found out that a duplicator was wanted. So we went to a local village hall hop and someone there offered me a
printing machine. So just like that I got an Offset lithoprinter at home! Someone typed up master sheets – it was Ann Hunt, I think, and we printed off
our copies of Scan from there. I think this was about 1978 or 1979.
In 1982 we moved to Bromsgrove and by that time a friend was making up metal sheets for us to print Scan. We had three or four copies a year.
Ann Underhill was secretary at the time and her husband, Nigel, was also involved. Janet then took on being Secretary in a voluntary capacity and the
job just grew from there. I think at one point Janet and Ann Carter did it at the same time and we converted a bedroom to an office.
It's funny because the Post Office still know where we are if people send us stuff using our old PO number, despite the fact that we haven’t used that
Janet was very good with people. She was a very good listener and great at giving advice. For example, I remember Janet talking on the phone to one person
who was at their wits end about epilepsy and the problems it was causing their child. Janet explained to this person how we dealt with a similar situation
with Georgine and within 24 hours we got another phone call from the same person, almost crying with relief, saying to Janet 'thanks to your advice you've
given me my daughter back!'
I remember one trip we made to London for the TSA's AGM. I think there must have been about 200 or so people there including one particular professor
from Manchester. I'll always remember what he said: 'Your job as parents is not to have any truck with incompetent doctors who know nothing about this
That really struck a chord – and from then on Janet made a thing of collecting good doctors. And in that respect she was Instrumental in setting up clinics
around the country including those in Leeds, Cambridge and Bath.
Janet got to be so experienced in the condition that quite often, just by talking to someone on the phone, she could work out what was going on with their
child. On more than one occasion I have heard her suggest to someone that she thought their child's symptoms indicated they may have a brain tumours, only
to find out shortly afterwards that she was right.
Sometimes people could be on the phone to Janet for hours, or they would phone her day after day. Sometimes I would say to her 'I don't know how you have
got the patience to do what you do!' But she just did.
Janet was only 59 when died. Her diagnosis of lung cancer came completely out of the blue – and she'd never smoked a cigarette in her life. We'd just
been to a funeral and Janet turned to me and said 'I don’t feel very well.' And that was it. She was diagnosed with lung cancer and six months later she
Our daughter Georgina now lives in our garage, well, it's not really a garage anymore but converted into a lovely flat for her. And her older brother,
Richard, lives in Paris. He was involved too as he built the TSA's first website. He has always been absolutely brilliant with Georgina – we've never had
any problems there.
As for the impact that the TSA has had on our lives – well, it has been massive. For a start it helped us to feel in control, because through our involvement
we became more knowledgable about the condition. And we just got to know so many people. We used to go to all the events, including the family weekends
away – there was such a good atmosphere among people. Everybody felt that little bit less on their own.
And Janet was just so good. The number of times that I have heard her talking for hours to a parent of a newly diagnosed baby. She was wonderful.
As for my hopes for TSA now? Well, when you have been in the founding echelons you hope it won’t fall apart. Janet would have been very pleased to see
that it is still here and is such a strong organisation. I remember one paediatrician telling me that he thought the TSA is Rolls Royce of medical charities.
And I think that says it all.