Supporting Siblings of Terminally Ill Children

Godfrey and I have two sons. Our eldest son Henry was born with a condition called Posterior Urethral Valves which has left him with severe kidney and bladder damage. It means he is fed through a tube in his stomach and catheterised every few hours. Henry turned seven in February. In the future he will need a kidney transplant but for now, he’s very happy child.

Because Henry’s quite well at the moment, we don’t need lots of support from Nicki, our Rainbow Trust Family Support Worker. However, there will be times when we will really need her. Henry will have to have a kidney transplant before long, so we’ll be in and out of hospital for a long time with that, and if he has to start dialysis, we’ll be up to London three times a week.

Nicki suggested she could get to know the boys now, so that when the time comes, it’s not going to be weird if she suddenly picks up my youngest, Thomas, from school, or sits with Henry in the hospital. So she comes over once a month and comes with me to pick the boys up from school and plays with them - they love her. We’ve also been to the Rainbow Trust drop-in group a few times where we do arts and crafts and stuff.

I feel that Thomas, being younger, is often in Henry’s shadow a bit. If Henry’s ill, obviously that has to take priority and Thomas sees Henry go up to London and do all these special things, and he gets quite jealous about that. But when we’re out with Nicki, Thomas is just as involved as Henry.

It’s good to know that she’s always there if I need her and she always remembers little things. For example, she sends little texts on important days to cheer me up. When Nicki’s with you, it’s one hundred percent about helping you.

“Nicki is there whenever we need her. She’s also a brilliant emotional support when the stresses and strains of our situation gets too much. Nicki’s been on this journey with families hundreds of times and because of that she understands the doctors’ jargon, she knows her way around the hospital and she is a dab hand with Nerf gun! It's all these things and more that Nicki does that makes things just a little bit easier for us,” says Godfrey.

I’m sure there are families out there who need more support than we do, but then support comes in lots of different forms. Every family has individual needs, and Rainbow Trust makes sure the support is right for every single family.

Thank you for enabling them to help families like mine, it means a huge amount.

Links:

• Read more about Beccy and family

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.