‘I wonder whether there are many other people like me out there, and if there are I would love to hear from them,’ says mum, grandmother and TSC carer
‘My husband John has TSC as do two of my adult children. I’m a carer for John and Vicki, our middle daughter. I would love to be able to make contact
with others who are in a similar position to me as I think the things we face are a bit different from what parents with young children with TSC
face today. There has been so much research, which is brilliant, and which is helping those newly diagnosed. But sometimes, as a parent with grown
up children with TSC, and a middle-aged husband with TSC, I feel in a bit of a limbo as we don’t know what’s coming next.’
John, 53, was diagnosed with TSC in his late 20s, and due to suffering dozens of fits daily he has been unable to work since then. Two of their three
daughters also have been diagnosed with TSC, and their third daughter, Lauren, has non-epileptic attack disorder.
‘We’d never heard of TSC, and for John, things went downhill rapidly after that,’ says Gail. Not long afterwards Gail’s older two daughters were also
diagnosed with TSC, and there were more challenges yet to come for the family, who were already struggling to take everything in.
‘John and I met when we were aged 11 and 12,’ says Gail. ‘I knew that John had had fits as a child, but nobody really thought anything much of it as
they did not seem to do him any lasting damage.’
After a successful – and seizure-free – nine year career in the British Army, John then started work as a long distance lorry driver. By then the couple
were married and had had their first daughter with their second, Vicki, on the way.
‘It was all going so well for us,’ says Gail, ‘and then one day, out of the blue, while he was on a long distance trip to Glasgow, he went numb down
John immediately stopped driving and underwent tests. ‘Multiple Sclerosis was suggested to us at first,’ says Gail, ‘but then a neurologist saw the
distinctive TS ash leaf marks on his skin and before long it was confirmed to us that John had TS. We had no idea what it was or what it would
mean to us.’
And there was more to come. Gail started to notice that her elder two daughters were having ‘vacant episodes’ and within months Gail’s life had turned
quite literally upside down as her husband, and two daughters were all diagnosed with TSC.
‘To be honest, at the time, I could not quite take it in,’ says Gail. ‘But I’d married John, I had my two daughters, and a third on the way, so I said
to myself that I would just take whatever came.’
Gail and her family were put in touch with the TSA and slowly she began to learn about the condition.
‘It was a bit scary, but at no point had I heard the word ‘terminal’ so I thought to myself, ‘this will be OK.’’
Thanks to Gail’s steadfast courage the family have made it through some very challenging times, with perhaps the most heart-breaking period being when
in 1995 they watched their beloved home being repossessed, with TSC robbing Gail and John of the ability to earn enough to keep it.
‘It was very tough,’ says Gail. ‘But at the end of the day, it was just a house. We were lucky enough to get a council house with a wet room, and my
youngest daughter lives close by with her husband and my three grandchildren, none of whom have TSC.
‘And my eldest daughter has done so well for herself, going to university and getting a great job. She always vowed not to let TSC beat her, and it
has not done so. We are all so proud of her.’
Now the family, who live in Manchester, are facing a fresh set of challenges thanks to changes to benefits payments.
‘It is a worrying time for us,’ says Gail. ‘But I am trying to stay strong. We are a close family and that’s what gets you through. And I have found
the TSA to be so helpful over the years.
‘Now I would really love to hear more from people like myself – middle aged people who are caring for other adults with TSC. So many of the challenges
we face are different to those of parents with young children with TSC – perhaps the TSA can set something up for us. That would be amazing!’