Sarah Gray

Knowing that there is hope there is the most important thing.

Our son Jack was diagnosed with TSC at six months old in May 2016. He is our first and so far only child and we have no TSC in our family. He has also been diagnosed with polycystic kidney disease.  It started with what we now know were infantile spasms at four months after a couple of months of GP visits, finally after my chasing we saw a paediatrician who sent Jack for a EEG that led to a 3 week hospital stay – that was the first we heard of Tuberous Sclerosis Complex.  

Both myself and my husband, Ian, are from farming families and work in the local areas we were brought up in. Ian sells agricultural machinery and I am a physiotherapist. We're both sporty, Ian plays rugby and I play hockey, so we have a lot of friends and quite extended networks of family and work contacts. So as for all the fundraising that's gone on, myself and Ian haven't done it, it's our family and friends who have. When I stop and think about it, it's quite overwhelming that so many of our friends and family have chosen the TSA as their charity to support. At times I have actually been embarrassed by the fundraising and donations that has been done or given as obviously we would rather not be in this situation. However I’ve learnt to embrace it, as only good can come of it for Jack and the TSA and promoting awareness of TSC.  We are a year and a half down the line since Jack's diagnosis and I think we will be approaching £20,000 soon.

Wherever we go everyone always asks how he is. I feel people are really sincere and genuinely want to know how he is getting on. We have been in the paper quite a lot with fundraising so Jack's almost like a little local celebrity! He'll be two on 6th October and has been in nursery for over a year now. He is walking around and he has just done his first rugby training session.  He is not talking yet but he is trying to make sounds and I think he does understand us (when he wants to!). I would say that, at the moment, due to his infantile spasms he is about 4-5 months behind what some of his peers are doing.

We first got in touch with the TSA when Jack was diagnosed. They were really helpful, directing us to get the right information as both us and family members had never heard of TSC so it was useful to have leaflets to give to them to read about the condition. It's really supportive to know that someone is there for us in our area, Christine, the TSA Adviser for the North of England kept in touch with us while we were in hospital.

When Jack was first diagnosed we went online and did the usual ‘googling’ about TSC, but we realised if you do that you can scare yourself . Now we take the approach that we'll just wait and see what happens. He will be what he is. And we all just carry on as normally as we can.

As for the next 40 years? More research, hopefully, pushing for medication that the children or adults need.  Being very realistic there's probably not going to be a cure in that time, but you never know. But what we do know is that you want your child to have the best quality of life they can possibly have, whatever.