This is Dee’s story
Dee is mum to Tilly, who has Rett syndrome.
“When Tilly was one, it was like a light went out. From that day, everything changed. The life that you had – you know, juggling with two kids like anyone else – and the life that you’ve now got are just completely different. Everything changed.”
Nothing prepared us for that diagnosis really and knowing that she would need 24 hour care. You go into shock.
Before the reality of it sinks in you go into a sort of deep shock. You get all of the bad news thrown at you and you think: Is she going to die when she’s really young? How are we going to cope? What are we going tell her sister?”
Tilly is intellectually completely aware and like any other child of her age, but Rett is a progressive condition which means that Tilly is unable to walk or talk or use her hands and she is fed through a tube.
“Tilly has a 73 degree curve in her spine which is very significant. Tilly relies on an adult for every single care need – to move postures, to be fed, to be bathed, to move position – every single need that we take for granted that we can do ourselves such as move our fingers or get up from a chair, Tilly needs help with.”
Tilly’s older sister, Thea, asks her parents why she can’t play with her sister like her friends play with their little sisters: “She only said recently, all I want to do is play with Tilly – I just wish that I could play with her like everyone wants to play with their little sister, and what do you say? I haven’t got an answer for that.”
One day, Dee was online, and saw some information about Together for Short Lives. She had been off sick as Tilly had had a feeding tube fitted, and she was finding it hard to cope: “I was looking to return to work and I just thought – how am I going to make it work? I was just trying to process everything.”
“So I emailed the helpline, and it was just amazing. I was just honest about how I was feeling. It’s a special skill to speak to parents of children with complex needs and life limiting illnesses, because you want someone who understands the enormity of what that looks like – and not everyone does.”
Dee had several email exchanges with the helpline, who were able to find her support in her local area, and help her transition back to work.
“Talking to Together for Short Lives was the catalyst for facing up to what had been a really difficult time – and actually it made me brave enough to feel that I could access help and that it wasn’t all in my mind. Without Together for Short Lives I wouldn’t be feeling as mentally strong as I do now.”