Ally Royall

When Jack was younger day to day meant that an adult had to be 1-2-1 with him all the time. His TSC meant that he had chronic epilepsy  he would have seizures multiple times a day. And at least once a week he was rushed off to hospital with a tonic clonic seizure, or status epileptus. He’d not breathe, sometimes have a heart attack. Someone had to sleep in bed with him at night, every night. He is autistic and has multiple behavioural issues, which, when he was younger  included regular incidents of violence towards his family.  

TSC has had a devastating effect on Jack’s life, my life and family life for Jack, myself and my daughter India. I had a major nervous breakdown when India was 2 as a result of trying to care for Jack and India as a single parent.  

Now, thanks to Everolimus, which he has been taking since he was 18, life has improved hugely for us all, especially Jack. He still needs supervision to make sure that he eats properly, remind him to take his medication, and help him with his finances – but he is more in tune with himself.  

He got the drug because he was on a trial for its effect on kidney tumours. Without Everolimus, which the TSA and Dr Chris Kingswood helped massively to get for Jack, I don't think Jack would be with us here now as he had inoperable SEGA (brain tumours) which were growing so fast when he was 17.  

TSC has been tough for Jack and for myself and his younger sister India. Jack would have status epileptus about once a week. And would then be in hospital for three days, then come home again and then go through it all again. He has also had three lots of brain surgery pre-taking Everolimus.  

But once he started taking this wonder drug it was like a switch had been flicked in his head and suddenly his ability to feel emotions was turned on. We were on our way to a hospital visit in Brighton, and all of a sudden he started crying and said 'Mum, one day I am going to die!' It was incredible because up until that point Jack had not shown that he'd ever felt any emotion like that at all – he'd go through brain surgery and everything and never cry, never show any reaction. And now, all of a sudden, he could feel things emotionally. It was amazing, wonderful, utterly transformative and positive – and yet there is a downside too because now Jack gets depressed at times because he understands the impact of TSC on his life and how it has robbed him of his ability to have anything like a normal life.  

Since taking Everolimus Jack has not had to be hospitalised at all due to epilepsy. Everolimus has given us a bit of family life back. I can now have holidays. I can have a relationship with my partner. India, my daughter can have time with me now, whereas her childhood was visiting me with Jack in hospital. It’s been completely life-changing. We are now a functioning family as opposed to a family in a state of constant medical crisis.