Support Families Who Have a Terminally Ill Child

by Rainbow Trust Children's Charity
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Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child
Phoebe in hospital
Phoebe in hospital

In March 2018, Phoebe was diagnosed with Fanconi Anaemia (a rare disease that affects the bone marrow which results in decreased production of all types of blood cells). She’d had severe pneumonia over Christmas, and had blood tests done.

The tests revealed that Phoebe’s bone marrow was failing so she had a bone marrow transplant (BMT) in July 2018. Tom, her dad, was a donor, which is very rare. If Phoebe hadn’t had the BMT when she did, she would have been more susceptible to leukaemia later on.

Phoebe had to spend 37 days in complete isolation after the transplant, where she could not have any visitors aside from mum and dad. They had to scrub in every time they went in and out of the room and all they could do in there was keep her company, watch some TV and play games, day in and day out.

Then, Phoebe was in semi isolation from August 2018 where she couldn’t mix with people outside of the family as her immune system was still compromised. It’s only now that Phoebe is able to start seeing friends and going to parties.

Whilst in hospital, a friend recommended Rainbow Trust to help the family better cope so they met Monica, a specialist dedicated Rainbow Trust Family Support Worker.

Both mum and dad work so they didn’t know anything about the medical world or the benefits out there for families like theirs. Monica from Rainbow Trust was a huge help.

Monica would also spend two hours with Phoebe so mum could get out for a break. Those days in hospital were so long - so the break made such a difference to mum and dad. Phoebe absolutely loved spending time with Monica and mum could spend some time supporting her other daughter, Harriet.

Phoebe’s mum said: “Having our Rainbow Trust Family Support Worker, Monica, has been a huge support to me and my family. Having Monica come in to give us a break made such a difference for all of us. She has supported and guided us through a very difficult year.”

When serious illness affects a child like Phoebe family life is turned upside down and time becomes more precious than ever. Rainbow Trust pairs each family with a dedicated expert Family Support Worker to help them face and make the most of each new day.

Phoebe, left, and her family
Phoebe, left, and her family
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Clare and Ben have three children: Connor, Esther, and Zachary, who was a surprise baby for them. Ben works full time and the family have no relatives nearby. When Esther was six weeks old family picture suddenly became very far from normal. After being called for a routine blood test Esther was diagnosed with Diamond Blackfan Anaemia (DBA), a disease so rare that only 125 people in the country had it, each of them with their own unique set of symptoms. Progression of the disease is different for each sufferer so it’s virtually impossible to predict the future treatment path for them.

For Esther, her steroid medication has been working well, stimulating the bone marrow to produce more red blood cells, but how long this can be continued is unknown. For Esther, the DBA syndrome also resulted in profound deafness in one ear, which has affected her education and her daily life. As DBA is so rare, even medical specialists are not wholly informed about the disease, so Clare’s contact with other parents of DBA children and social media groups has been important for her. She needs to be on the alert for any changes in Esther’s condition which might reveal that the treatment is no longer as effective as before.

A further blow for the family came when Zachary was three months old and was also diagnosed with DBA. Both Ben and Clare were tested but were not found to be carriers. This was a shock for them, and Clare said that it really knocked the family off course. Unlike his sister, Zachary didn’t respond to the steroids, didn’t sleep, and didn’t gain weight either. Admitted to hospital again at five months old, his future was somewhat unknown.

It was at this point that Clare contacted Rainbow Trust Children’s Charity to ask for some help. She wasn’t sleeping properly, and her mental health was reaching her limits. They met Christina and Nicki, Family Support Workers, who provided practical help by coming to hospital appointments with them - with three children this was invaluable – but, equally important, they were able to give Clare the vital emotional support she really needed. Looking after two children with complex needs along with an 11 year old had left her feeling isolated. In her words “with Nicki’s help, we feel human again, having someone there just for us, somebody who is independent and professional who understands our situation. It really does fill that gap when you have a family in crisis.”

Rainbow Trust’s Family Support Workers can give more than just logistical help, they can also provide that emotional support that is so crucial for families struggling to stay afloat.  


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Esther, Zachary and Connor with Nicki
Esther, Zachary and Connor with Nicki

Clare and Ben have three children: Connor, 11, Esther 7 and Zachary, a surprise baby, is 18 months old. Ben works full time and the family have no relatives nearby. When Esther was six weeks old a fairly normal family picture suddenly became very far from normal. Called for a routine blood test Esther was diagnosed with Diamond Blackfan Anaemia (DBA), a disease so rare that only 125 people in the country have it, each of them with a unique set of symptoms. Progression of the disease is different for each sufferer so it’s not possible to predict the future treatment path.

For Esther, steroid medication is currently working, stimulating the bone marrow to produce more red blood cells, but whether this can be continued is not known. The DBA syndrome also resulted for Esther in profound deafness in one ear, affecting her education and daily life. As DBA is so rare even the medical specialists are not fully informed about the disease so Clare’s contact with other parents of DBA children and FaceBook groups is especially important. She needs to be on the alert for any changes in Esther’s condition which might mean the treatment is no longer effective.

A further blow for the family came when, at three months, Zachary was also diagnosed with DBA. Both Ben and Clare were tested but not found to be carriers. This was a complete shock and as Clare says, knocked the family off course. Unlike his sister, Zachary didn’t respond to steroids, didn’t sleep and didn’t gain weight. Admitted to hospital again at five months the future was unknown.

At this point Clare contacted Rainbow Trust Children’s Charity. Short of sleep, with deteriorating mental health, she had reached her limit. They met Christina and Nicki, Family Support Workers, who provided practical help by coming to hospital appointments with them - with three children this was invaluable – but, equally important, they were able to give Clare especially the emotional support she so desperately needed. Looking after two children with complex needs and an 11 year old had left her isolated. In her words “with Nicki’s help, we feel human again, having someone there for just us, somebody who’s independent and professional who understands. It really does fill that gap when you have a family in crisis.”

Rainbow Trust’s Family Support Workers can give more than just logistical help, they can also provide that emotional support that is so crucial for families struggling to stay afloat.  

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Sabrina with Sophie and her sisters
Sabrina with Sophie and her sisters

Thank you so much for supporting children with serious illnesses by funding our projects to give quality time to children and their families at a difficult time in their lives.

Sabrina is one of our Family Support Workers, in the North East Team: 
“Working for Rainbow Trust humbles me, it keeps my feet on the ground and reminds me of what is important in life. The families that I support are allowing me into their lives at what is likely to be their worst times, this is precious. I support people of different ages and with different conditions and if I can make their day a little easier, help make happy memories or create a smile then it’s a job well done!”

Our Family Support Workers help children to keep up at school, as well as enjoy days out with siblings or time to talk to someone who understands what they are going through. They help the family get to hospital appointments and stay with them through long treatments, so they aren’t alone.

Sabrina supports Nicola, whose daughter Sophie was diagnosed with leukaemia two years ago:

“My husband Paul and I have three daughters and our world was turned upside down. But it was thanks to Rainbow Trust Children’s Charity that were able to face the difficult road ahead. 

One morning I met Sabrina, a Family Support Worker, at hospital. She explained how Rainbow Trust helps families like mine. Within weeks, Sabrina was driving the girls to school so they didn’t miss out on their studies. It meant that Paul could go to work and I could stay with Sophie at the hospital so she wouldn’t be alone.

Soon after Sophie’s diagnosis, she was admitted to intensive care and put into a coma while her body tried to fight several serious infections. We were told that she’d have to wake up on her own, if she was going to survive. Just days before Christmas, Sabrina arrived at the hospital with presents for the girls. I’d been in hospital with Sophie so I hadn’t had time to shop and we’d all but cancelled Christmas. Then, on Boxing Day, we had the best present of all. Sophie opened her eyes.

Since then, she’s been responding so well to treatment that she’s ending chemotherapy in January. Sabrina has been with us every step of the way, giving the girls time to enjoy childhood and being there for me too, when I needed someone to talk to, who understood how difficult it was to juggle hospital, school, work and home life.”

Please spread some Christmas joy this festive season and donate to Rainbow Trust’s project to help raise funds to reach more families who are caring for a seriously ill child. 

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Sabrina helps Daniel with some homework
Sabrina helps Daniel with some homework

Just after his second birthday, Daniel was diagnosed with neuroblastoma, a cancer affecting mostly babies and young children. His devastated parents, Claire and Michael, were suddenly plunged into the bewildering world of hospital tests and treatment, while Daniel withdrew into himself, not letting anyone in.

Within a few weeks of diagnosis, Daniel’s parents were introduced to Sabrina, one of Rainbow Trust’s Family Support Workers. Daniel took to her straight away.

“Sabrina is just a wonderful human being” says Claire. For Claire and Michael, her arrival brought the human contact and support they needed. Sabrina helped with hospital appointments, sitting with Daniel while his parents talked to doctors, made phone calls or just had coffee together, to destress for just an hour. Every moment was incredibly valuable to both of them.

“Sabrina has been there for me,” says Claire. “I’ve needed someone to talk to who understands what we as a family are going through. She’s put me in touch with other parents at the hospital, which has been so helpful. Now I can talk to others who know exactly how I’m feeling and can offer me some kind words and support. I feel so much less isolated now. I just can’t imagine life without Sabrina and Rainbow Trust.”

In supporting Rainbow Trust’s Family Support Workers, your donations are making an enormous difference to families struggling to cope with the strain that having a very sick child imposes on everyday life. Thank you on behalf of all our families for every wonderful moment we’re able to give them.

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @RainbowTrustCC
Project Leader:
Hanne Widmer
Leatherhead, Surrey United Kingdom
$28,972 raised of $40,000 goal
 
586 donations
$11,028 to go
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