Supporting Siblings of Terminally Ill Children

Amberley and John have five children. Their middle one, eight year old McKenzie has battled stage 4 neuroblastoma and atypical HUS, a disease that destroys red blood cells and causes kidney failure in children. 

After eleven months in hospital, Amberley and John met Rainbow Trust Family Support Worker Dawn in the playroom one day. She asked them what kind of help they needed and Amberley told her she’d like someone to play with her children and bring some fun back into their lives, since they’d lost so much play time with McKenzie being so ill. 

All five children adore Dawn. If McKenzie is in hospital, Amberley can ask Dawn to help out with the other children. The time Dawn spends with them allows Amberley to do the shopping or housework while knowing that McKenzie is being cared for by someone she trusts. 

As well as caring for the children, Dawn provides the whole family with emotional support: “If one of the older girls is struggling emotionally, I call Dawn to come and have a chat with her. Sometimes they won’t open to me as they do her. And one day when Dawn came, she told John and me to go and have a meal, just us two, we never get to do that,” remembers Amberley. “We really needed a time out.” 

As McKenzie gets older, the effects of his treatment and his illness will become more apparent. He won’t be able to play sports like other boys his age but his enthusiasm to embrace life is obvious and, despite being a very poorly little boy, he still manages to face each day with a smile on his face. 

His older sisters, Memphis and Missy, talked to Dawn about helping to give something back to the other sick children they had met, so they’ve been fundraising for Rainbow Trust at school. They’ve organised a non-school uniform day where children went to school in rainbow colours and organised a cake sale in aid of Rainbow Trust. “The biggest support has come from Rainbow Trust and we are going to try our hardest to give back”, says Amberley. 

Dawn continues to support the family, providing whatever they might need. Rainbow Trust will be there for McKenzie’s family for as long as they need her, thanks to vital donations towards their work. Thank you for giving McKenzie and his family precious time together at a difficult time in their lives. 

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