Supporting Terminally Ill Children

My daughter Emily is a sixteen year old with a life-limiting brain illness. She spends much of her time in a wheelchair. She needs the supervision of a first aider, which means going out with friends independently is impossible. Having girlie chats or being able to confide in friends about her worries and fears is difficult. Jayne, Emily’s Rainbow Trust Family Support Worker, is the only person Emily can talk to. 

When Jayne visits, she does arts and crafts with Emily, which takes her mind off of her illness for a short time. I can see how it lifts her mood, and the difference from when Jayne enters a room and when she leaves is amazing. During this time, I doesn’t have to worry about Emily and can get on with household chores or have some precious time for myself, which is very rare.”

Jayne also spends time with Gracie, my younger daughter. She takes her to the various sibling groups that Rainbow Trust runs nearby. The groups help her to mix with other siblings who are all struggling with similar challenges. This gives brothers and sisters like Gracie a break where she can totally relax and not have to think about Emily. She can recharge her batteries. 

Jayne is a trustworthy confidant for me too. The help she provides is so much more than just help, it’s care, compassion and understanding. She’s a rock. When she calls or visits, I can take a step back and it helps steady my ship again. She’s invaluable, without her support, I just don’t know where we would be. 

It’s brilliant to see Emily light up when Jayne comes around and it’s so valuable for me to have a break. It’s increased my emotional wellbeing having Jayne to talk to. 

Emily wants to be a counsellor because of Jayne. She says, “I want to give back what Jayne has given to me as well. Without Jayne I don’t think I’d be able to live with myself being the way I am. I can talk to Jayne about any and everything.” 

Jayne is amazing and the work that Rainbow Trust does to give this service is exceptional. Thanking Rainbow Trust and its supporters – like you - is difficult to put into words, but every day I am grateful for all the ways that Jayne makes every moment count.