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
Charlie, Sam and Amy-Louise
Charlie, Sam and Amy-Louise

Emma was five years old when she died from Leukaemia. She had spent the previous nine months in hospital. Her family was supported by Family Support Worker Steve and Family Support Volunteer Worker Annabel. Emma’s mum Charlie explains just how hard things had got: “Before Rainbow Trust it was really hard, I never got a break and had just no time out plus my other children weren’t getting the attention they needed. It’s hard to give your sole attention to children when so much of it is focused on your sick child”.

Steve and Annabel would take Emma’s elder sister Amy–Louise and brother Sam out for the day and would also provide emotional support to Charlie during those difficult months.

Emma chose to spend her last days at their local hospital and was taken there on Christmas Eve. Charlie remembers: “She had 100 visitors that night, including Annabel. But it was only Annabel that Emma allowed to stay in the room. This helped me massively as it showed how much she trusted her and allowed me out to speak to the other visitors.”

Emma died on New Year’s Day.

Rainbow Trust has continued to support the family after Emma’s death. Steve and Annabel helped Sam and Amy-Louise read at the funeral and Steve also read Charlie’s words for her as she was too emotional to do it on the day.

Since Emma’s death, Charlie has found it hard to leave the house and often has panic attacks if she does. Charlie says, “it’s mostly because for 2 years I didn’t have any time for myself, I just needed to stop and pick myself up and I decided to just stay indoors to do this.”

However, Rainbow Trust has helped maintain a sense of normality in the house. During the summer holidays Steve has taken the kids out for breaks and taken them swimming and Annabel will spend time with Charlie and talk to her.

Charlie describes how important this support has been: “You’ve had no life bar the hospital for two years and then when Emma died, it stopped. I had no idea what to do; looking after Emma was my life. They haven’t just helped life have some normality; they are a life-saver. That time after the death, life goes on, friends disappear, go back to work, but Rainbow Trust are still there.”

Rainbow Trust has also helped Amy-Louise and Sam cope with Emma’s death as Charlie explains: “The kids have no idea what to do with the aggression that they have from grieving, they have a psychologist who comes but Steve and Annabel will take them off separately when they need it or together if that is best”.

Charlie could not be more grateful to Steve and Annabel: “For me the support was really important at the funeral and leading up to when Emma died. I’ll never forget that. That is support; that is what I’m talking about.”

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The comprehensive support we give to grandparents and relatives is not provided by any other organisation.  When a child has a life threatening or terminal illness, they are affected too.  This year we helped grandparents understand complicated medical issues, cope with their grandchild’s diagnosis and if needed, supported them in their grief so they could stay strong for their children. 

Jeanette and Tony’s Story

Jeanette and Tony, grandparents of 13-year-old Jordan, have been supported by Sarah, one of our Family Support Workers since 2013.  Jordan has cancer.  She lives with her grandparents as her mother died in 2013.  Sarah supports Jeanette emotionally, she is someone for her to talk to and lean on.  Sarah also helps with Jordan’s transport to hospital appointments and takes her out to give her grandparents a much needed break.  

Grandparents are often forgotten, but we support them and the whole family for as long as they need us.  

This devoted couple has experienced so much sorrow over the loss of their own child, but have selflessly put their grief aside and done everything in their power to give Jordan all she could need.” Sarah, Family Support Worker

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Karen: “Without Rainbow Trust this family would have fallen apart.”

Jonathan Allen, 16, Karen, Pippa, 18, Holly, 14, Marcus, 11

When 16 year old Jonathan noticed pains down his left side, he thought they were muscular but when they got worse, his mum took him to the doctor. Sadly, keen karate fan Jonathan, was diagnosed with bone cancer.

He started chemotherapy on 10 March 2013.


“It was only a week before I was diagnosed but every time I stretched I was in pain. I mentioned it to my mum and took some painkillers but when it didn’t improve we went to the doctors and I was referred for an emergency MRI. I had to have an operation to remove the tumour, which was tricky as it was behind my ribs, but they managed to remove the tumour and I started chemo straight away.”

Jonathan, who is studying xxx at college, managed to keep up with his studies throughout his treatment aside from a couple of days off when he was at his worst. He’s continuing his course and hopes to be a veterinary nurse or lead talks about the animals that he deals with.

“The doctors told me to take it easy after my treatment and I have been, to an extent, but I don’t want to miss out on what my friends are doing. I’m hoping to get back to some karate training soon too.”

Karen, Mum

“Initially I just gave Jonathan some painkillers and thought nothing of it but it became clear there was something else going on so we took him to the doctors and were referred for an MRI scan. It was a bolt out of the blue when he found out he had cancer and I wasn’t sure how I would cope as a single mum. I’ve got Jonathan’s older sister, Pippa, 18, who is a massive help but has her own life as well as the two younger ones, Holly, 14 and Marcus, 11. Initially when I said I would struggle I was told that Pippa would have to leave college and become a ‘second mum’ to the kids, which I was not happy about. I was also told that another option was to put the younger kids into foster care, which I was determined would not happen.”

“Rainbow Trust and our Family Support Workers Pete and Jade, saved us when we heard about them in September 2013. Without them, Jonathan would have lost his college place, Pippa might have had to leave college and we would have been struggling with the three hour round trip to Addenbrookes while looking after the younger kids. I can’t explain the difference that Rainbow Trust has made to us.”

“It’s little things. Like last week Jade took Pippa and Holly to Lakeside and they all went shopping. It meant that they had a day which was just about them, which is so important when we have all had to focus on Jonathan. Jade also has an amazing relationship with Jonathan and we all trust her. He’s happy in her company, as am I and the other kids, and her support has allowed us to get on with our lives throughout Jonathan’s diagnosis and treatment. I’ve told lots of people about the amazing work Rainbow Trust does. Without them this family would have fallen apart.”

Pippa, Sister

“Having Jade has really helped eased the tension between me and mum, she’s been a lifesaver. We’re both very strong willed and it’s been a hard time but Jade makes sure that we both have someone to talk to. Going to Lakeside was brilliant and something we wouldn’t have had time to do without Jade. Without Rainbow Trust, mum and I would have been at each other’s throats but Jade has helped us work through difficulties and have time to ourselves.”

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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 support Charlotte at her baby’s birth, to take care of them both 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.

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McKenzie's Family
McKenzie's Family

In August 2011, two year old McKenzie fell off a chair and did what most boys do, he cried for a minute, then carried on playing. When his mum, Amberley, went to change his nappy, he let out a “high pitched scream in agony,” but she didn’t know why. She watched him over the course of the day and noticed he had a stiff neck which she assumed was from the fall. Amberley and her husband John, took him to Lymington Casualty where doctors suspected that he had meningitis. They were rushed up to the General Ward where they were told he had tonsilitis and could go home.

 Weeks later, McKenzie was still not right and after numerous visits back to the hospital, Amberley noticed that he couldn’t turn his head and had a pea sized lump on the side of his neck. In October of that year, she took him back to the Paediatric Centre who, once again, told her it was nothing. Amberley refused to leave until someone examined him. An ultrasound scan and biopsy revealed that he had abnormal lymph nodes and Stage 4 Neuroblastoma.

 The tumours in his neck had started crushing his airways so McKenzie was put into a coma for four days to save his airways from collapsing. He underwent chemotherapy until the end of March and was kept in hospital for eleven long months.

 McKenzie was diagnosed with atypical HUS, a disease that destroys red blood cells and causes kidney failure in children. He underwent six months of chemotherapy, then surgery, then radiotherapy which involved a general anaesthetic daily for three weeks. The chemotherapy had to be stopped as his body had begun to shut down, “If we’d given him one more dose of chemotherapy, we’d have killed him,” says mum. In the September of that year, McKenzie started treatment in the form of an IV infusion drip which he had to have every two weeks in hospital. The drug protects his kidneys by slowing their deterioration but the family are aware that he will need a transplant when he’s older.

 McKenzie is the only person in the world who has this condition - most people who suffer from HUS recover but McKenzie won’t. “We take every day as it comes, we wake up in the morning and today’s a good day. We’re very lucky, a lot of McKenzie’s friends on the ward have passed away. We’re lucky to have made it this far, we just don’t know what tomorrow will bring. Today’s a good day.” For a family which has been through so much heartache and difficulty, they are exceptionally positive and see each day as a blessing. Amberley remembers the day when McKenzie was first diagnosed and given a 40% chance of survival and another mother on the ward said, “‘40%? That’s amazing!’ “I looked at her and thought, you’re right, even 1%, you have to cling to it!”

 CLIC Sargent recommended Rainbow Trust to Amberley and John but they didn’t feel that services like taking children to and from school was something they wanted. A while later they met Rainbow Trust’s Southampton Family Support Worker Dawn in the playroom at the hospital. She asked them what kind of help she could provide 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 that with McKenzie being so ill. Dawn visited the family’s home and played with the children who immediately ‘clicked’ with her. “They all just love her, don’t’ they?” Amberley says to John.

 The time Dawn spends with the children allows Amberley to do the shopping without having to drag all five children along. If McKenzie is in hospital, she can ask Dawn to help out with the other children.

“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 fondly.

 As well as playing with the children, Dawn provides the family with emotional support, “If one of the older girls is struggling emotionally, I call Dawn to come and have a chat with her.” She has been very supportive throughout McKenzie’s illness and helps the family stay optimistic.

 McKenzie is unaware of the enormity of what he has been through and accepts his life for what it is and makes the most of it, “He’s the only child I know who rides his drip like a skateboard,” laughs his mum.

 He recently underwent some tests which revealed that his bladder is the size of a walnut so can only hold 40ml, “…so he’s been wetting himself for the past two years and people think he’s lazy or just hasn’t cottoned on, but he’s had this problem.” Doctors don’t know if his bladder was damaged during treatment. McKenzie also has Horner’s Syndrome which means he has one pupil much larger than the other, a droopy eyelid and reduced sweat on one side of his body, “when he’s been running around, he has a half red face and half his hair’s wet,” tells mum.

 As McKenzie gets older, cosmetically, the damage of the treatment and his illness will become more apparent. Despite all of this, he looks like a typical happy five year old playing with his siblings. He won’t be able to play certain sports like other boys his age but his parents encourage him in every way they can. “He came home from school with a note about a Construction Club and when I told him he could do it, he said, “Yes! I got one!” and then ran around the office the next day telling the staff he could finally join a club.” 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.

 Older sisters, Memphis and Missy, wanted to give, “something back to the other sick children,” so have been fundraising for Rainbow Trust in a number of different ways. They have organised a non-school uniform day at their school where children went to school in rainbow colours and they’ve organised a cake sale in aid of Rainbow Trust. Their latest idea is a Big Tea Time for Rainbow Trust in line with The Big Hour campaign. On 22 October, the family’s local pub has agreed to let them run a fun day with a raffle, games, cake sale and refreshments, all in aid of Rainbow Trust. The girls have been given the day off from school to be a part of their great idea and hope to raise as much money as possible. “…the biggest support [for us] has come from Rainbow Trust and we are going to try our hardest and anything will be a bonus, won’t it?” says Amberley.

 Dawn continues to support the family providing whatever they might need. Her time is precious to them as they continue to juggle life with five children and hospital visits, while maintaining a positive environment for them all.

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
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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