Supporting Siblings of Terminally Ill Children

Keeley’s pregnancy was normal, but when baby James was born, he was smaller than expected. During his first year, he was diagnosed with several conditions, including Down’s Syndrome and other genetic disorders, which means he requires long-term treatment as he grows.

“That was the worst time for us,” says Keeley. “We were told that he was unlikely to live to 18, but as he is the only person with this mix of illnesses, little is known for his future.”

The family’s nurse referred Keeley to Rainbow Trust Children’s Charity when James was six months old. Their dedicated Family Support Worker, Jayne, supports James’ older brother and sister, Cameron and Iona, by taking them to various sibling groups where they can mix with other siblings of seriously ill children. This gives them the space to feel normal, being amongst others in similar situations. “We can talk about what it’s like for us, I’d feel more alone without the groups,” says Iona.

Keeley knows she can call Jayne to be there for her other two children. Aside from the practical help, “Jayne talks to me, checks in and makes sure I am OK,” says Keeley. “She has been a really good thing for us.”

“Life would have been much harder without Rainbow Trust, and it would have been much worse on Cameron and Iona. Jayne has taken the children to the hospital to visit their brother when I’ve had to be with him all day. We are really lucky to have Jayne. The children are really comfortable with her and Jayne goes above and beyond what she is expected to give. She has certainly gone out of her way to give us what we have needed. It’s fantastic, it’s more than a service. Jayne is invaluable.”

Every donation you make to Rainbow Trust Children’s Charity will support families like Keeley’s, for whom the simple things make a huge difference for the whole family. Thank you.