Rainbow Trust Children's Charity

Rainbow Trust Family Support Workers provide emotional and practical support to families that have a child suffering from a life threatening or terminal illness. They provide access to healthcare, education, therapy, welfare support and benefits for these families at the most traumatic time of their lives together with emotional support for the whole family.
Apr 15, 2015

Sibling Support

At 10 weeks old, Dominic was rushed into hospital with swelling and fluid on his brain and underwent emergency surgery to remove the fluid. An MRI scan, four days later, showed a cancerous mass on his brain, spinal column and central nervous system. Doctors told the family that what they were seeing was extremely rare and unlikely to be treatable. Dominic’s parents were told he probably only had three weeks to live.

During the following week, further biopsies and tests revealed the “tiniest glimmer of hope,” remembers Natalie, Dominic’s mum. There was a chance that the cancerous cells could respond to chemotherapy drugs but the consultant was hesitant as Dominic was so small and the drugs would leave him open to any kind of infection. He had to stay in hospital for the next five months and would not leave the ward in that time. Natalie stayed with her baby boy for those five months and worried constantly about him and Zach, her other son, who she could not see. She was isolated and governed by the hospital ward and Dominic’s treatment.  

CLIC Sargent referred Natalie to Rainbow Trust and Vicky, one of our Durham based Family Support Workers. Vicky visited Dominic in the hospital once a week which gave Natalie a few child-free hours where she would “grab a shower or get off the ward and relish the outside air.”

 “Parents who haven’t found themselves in similar situations cannot appreciate the dilemma of having a very sick child confined to a hospital ward. Despite the parent’s need to get away from it all, there is a terrifying fear of leaving their sick child unless they can balance it with the knowledge that their child is safe and cared for. I trusted Vicky from the moment we met, in part due to the fact that Rainbow Trust workers are well known to the other families on the ward going through similar circumstances and everyone sang Vicky’s praises. Primarily though, I felt comfortable leaving my baby with Vicky because Dominic himself appeared to love the time he spent with her.”

During those five months Dominic underwent intense IV chemotherapy and against all the odds, his next two scans revealed that the tumour had reduced in size. He was sent home and allowed to return to the oncology clinic on a regular basis for the next 12 months for oral chemotherapy administered by his parents one week out of every four. Dominic had to have an NG tube fitted down his nose to administer the drugs. 

When Dominic was diagnosed, Zach was five years old and he struggled not having his mum around for those five months. As much as Natalie tried to be there for Zach, she could only do so much. She told him he could talk to her about anything that was bothering him to which five year old Zach replied, “I can’t mummy, you’re never here because you live in the hospital.” Natalie was heart-broken seeing what an impact Dominic’s illness was having on his brother but she was unable to do anything about it at the time. This is where Rainbow Trust’s sibling support came in. Vicky took Zach on days out and to drop in groups where he met other children and families in similar situations. Zach knows his family life is not normal so Vicky has tried to let him do things that can help him feel more normal. At the drop in groups he can talk to other children who also have a sick sibling and he gets to do arts and crafts which is something he loves. The hospitals give their patients the Beads of Courage when they have been through various treatments so doing the arts and crafts at the drop in groups means he can take his own achievements home.

“Rainbow Trust Family Support Workers all know the siblings, they put the hours in,” says Natalie so she felt very comfortable leaving Zach with Vicky and the others as she knew they were aware of his situation and would look after him.

Shelly began supporting the family when Vicky went on maternity leave and Dominic adores her, so much so that “Shelly” was one of his first words. Once a week she visits the family and takes Dominic to soft play where he can play and be like other children his age.

Without Rainbow Trust, Natalie believes that the desperate situation they were in would have been worse. “With their help, they made our unbearable situation more bearable. Until you have walked in the shoes of a parent with a sick child, you cannot understand, but Rainbow Trust does,” says Natalie. “Rainbow Trust comes along and looks after your child for a few hours and you know you can trust them.”

Vicky’s weekly visits meant that Natalie knew she would have that break where Vicky would stay with Dominic and watch over him while Natalie went for a walk, got out of the hospital and walked into town, “just to be with other people in a normal environment. I’d immerse myself in the crowds, make phone calls or take a shower and wash my hair, without any interruption.” Natalie knew Dominic was safe, she knew that Vicky was happy changing his nappies with all his tubes etc and she knew that Vicky was an advocate for her child when she wasn’t there.

 “With Rainbow Trust I didn’t feel that my coping abilities were being judged. Other family members or families were always trying to give us useful advice but unless you’ve been in the same situation it’s difficult to do this,” says Natalie. “Rainbow Trust comes along and puts an arm around you and walks with you, understanding what you are going through.” The Family Support Workers come as often as they can within the confines of their diary. Shelly taking Dominic out has been good for his development as he missed out so much being in hospital and in treatment for so long. She still takes Zach out, picks him up from school and also takes him to sibling groups.

 Now that Dominic is well, Natalie knows that her family does not need Shelly’s help as desperately as others might. “Shelly does what she can. If something arose or we had an emergency, I know I could ring Shelly and I know she’d help,” says Natalie, “Rainbow Trust is fabulous.”

Apr 15, 2015

Why we need your support

When Charlotte, a single mum of one, discovered she was pregnant, she was so excited and happy but a pre natal scan showed that, tragically, her baby had a heart defect and was not expected to survive birth.

The hospital contacted Rainbow Trust and asked us to take care of Charlotte and her baby’s end-of-life care. They also asked us to help Charlotte to look after Alfie, her two-year-old son.

When Bryan, our Family Support Worker in Swindon, called Charlotte he discovered she was already in labour. She asked for his support and he went straight to the hospital. She asked him loads of questions and talked about death, dying and funerals – she was very open about it all. Bryan stayed with her and supported her throughout her labour and her baby boy, Charlie, was born without any intervention.

For a 21 year old, the birth of her baby and his imminent death left her reeling between feelings of excitement, relief, fear and grief. Charlotte hoped that he was all right - he looked ‘perfect’, with no signs of being ill. Bryan stayed with her until she settled and agreed to return in the morning.

Sadly, a scan confirmed baby Charlie’s condition and prognosis. Charlotte was very upset and wanted to be with Charlie at the hospice. While she was there, Bryan spent time with Alfie and took him to visit her. He listened to Charlotte as she talked about baby Charlie’s impending death, and together they made funeral plans.

While at the hospice, Charlotte wanted to take Charlie home to “see his home”, the bedroom she had prepared and for them to have some time like a ‘normal family’. Bryan and a hospice nurse accompanied Charlotte and her boys home. This time was very precious to Charlotte. She felt she could pretend that everything was normal.

Charlie lived for 19 days. After he died, Charlotte struggled to come to terms with his death and relied on Bryan greatly for emotional support during the week leading up to Charlie’s funeral.

Bryan continues to support Charlotte and Alfie. He takes them to the cemetery and also encourages Charlotte to visit Rainbow Trust’s local drop-in group for additional support.

 Bryan supported Charlotte through the most difficult time of her life. He will be there for her as long as she needs him.

Jan 15, 2015

Sibling Support

Mohammed died following a muscle tumour in the face that had spread to the rest of his body. For his parents, Hoosna and Jiade, Mohammed’s death meant an end to the many familiar faces surrounding them and their son during his treatment and until his death. Rainbow Trust is the only organisation that continues to support the family, including brother Fardeen (11) and sister Haagra (six), beyond Mohammed’s death.

 Families tell us how difficult it is when many of the professionals who supported them move on to work with other families after their child dies.

Rainbow Trust’s support is not time limited and does not end after a child dies. We know that families may need support for months or years, and their continuing contact with the Family Support Worker who knew their child, brother or sister is invaluable.

 Zak, Family Support Worker, spent time with the whole family before and after Mohammed’s death

The family was introduced to Family Support Worker Zak before the family received the devastating news that Mohammed’s tumour had spread. Zak spent time with Fardeen and Haagra, preparing them for their brother’s death, taking them to the park and giving them valuable time away from the family home.

 Family Support Workers are skilled in responding to each family to meet their individual needs. They help parents face going back to work, preparing them for the many questions they will deal with and providing support for families on the anniversary of their child’s death.

 When brothers and sisters are ready to return to school they may ask their Family Support Worker to visit their school with them to talk to teachers and classmates.

 Since Mohammed’s death Zak continues to visit the family spending time with Fardeen and Haagra to help them understand and cope with their brother’s death and share memories of Mohammed.

 The family continues to grieve for Mohammed with the continued support of Zak.

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