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.
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.
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.
On Sunday 3 June families around the UK celebrated National Cancer Survivors Day. Among them was McKenzie and his family. McKenzie has now been cancer-free for five years.
To celebrate, McKenzie wore a specially made t-shirt to school celebrating his cancer free status. Rainbow Trust Children’s Charity has been supporting the family since McKenzie was first diagnosed with stage 4 neuroblastoma in 2011, when McKenzie was just two years old.
“We were introduced to Dawn, one of Rainbow Trust’s Family Support Workers, in the hospital playroom just six weeks after the diagnosis, and she asked us how she could help. I told her I wanted someone to play with McKenzie’s brothers and sisters and bring some fun back into their lives. Dawn and the children clicked immediately. The time Dawn spent with the children meant I could do simple tasks like the shopping without having to take the five children along. Or when McKenzie was in hospital – sometimes for months at a time - Dawn was an invaluable extra pair of hands at home and enabled my husband and I to have important conversations without distractions.
Thanks to Dawn and support from Rainbow Trust, the isolation felt by many families with a seriously ill child was removed and we were given precious time to focus on creating happy memories as a family. She not only kept us optimistic but provided much needed practical and emotional support to all of us.”
McKenzie’s mum Amberley
Your donations are making a wonderful difference to families just like McKenzie’s by funding vital Family Support Workers to care for families struggling to cope with their child’s illness. Thank you.
Nicole and Jessica were diagnosed with Batten Disease within three months of one another. The sisters receive enzyme replacement therapy every fortnight but Jessica is too young to have it in England so the family must travel to a hospital in Hamburg, Germany, while Nicole, now five, goes to Great Ormond Street Hospital in London.
The unimaginable strain of juggling these appointments with normal life, has been made easier for their family because of Rainbow Trust, which has provided some calm and routine to their intense schedule.
Rainbow Trust Family Support Workers Sabrina and Kate provide practical and emotional support to the whole family by taking the children out and giving parents Gail and Matthew some much needed respite.
“We would be absolutely stuck without Rainbow Trust,” Gail says. “It’s having that regular support which we can plan things around. We want to enjoy every precious moment of all being together.”
Gail and Matthew’s determination and motivation, together with Rainbow Trust’s support, has helped them remain strong.
“Rainbow Trust knows how much we need and appreciate them. They are our only source of structured support and they enable us to do things together and they’ve got our back.”
Rainbow Trust is a national charity which offers practical and emotional support for the whole family; from their child’s diagnosis, during treatment and, if needed, through bereavement. Your donations are currently helping over 2,300 families each year.
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