Support Families Who Have a Terminally Ill Child

Our gorgeous little boy, Samuel, has a life-threatening heart condition. He underwent his first open heart surgery at just four days old. His heart condition means he has to be watched all the time. Crying and coughing could trigger a cardiac arrest, so we need to keep him calm.

Our friends and family offer to look after our daughters Daisy and Betsy but no one’s comfortable taking on the responsibility of looking after Samuel. The only person who gives us a break from our desperate situation is Sarah, a Family Support Worker from Rainbow Trust.

We couldn’t do without Sarah’s support. She’s been supporting our family for two years. When she looks after Samuel, it gives us time with Daisy and Betsy. Samuel wakes in the night up to 25 times, so having Sarah there to look after Samuel during the day means we can catch up on some sleep after a difficult night.

She also cares for Betsy while Samuel has his hospital appointments. If we’re delayed, which often happens, she picks Daisy up from school. When Samuel had major surgery last summer, he was in hospital for a month. We didn’t have a car, so Sarah was our lifeline. She drove us to the hospital and would keep Samuel and Betsy occupied for hours while we spoke to doctors.

Samuel was still recovering from his heart surgery last Christmas and it was a struggle. Without Sarah, we don’t think we would have remembered everything we needed to make the day special for the children. She collected the Christmas tree, helped with the shopping and made pigs in blankets - Betsy’s favourite! She sat down with the Argos catalogue and helped the girls write out their Christmas lists too.

Without Sarah, we wouldn’t be able to manage. Please support Rainbow Trust to reach out to more families at Christmas and throughout the year.

Becky is a mum supported by Nicky, a Rainbow Trust Family Support Worker who provides her with emotional support. Becky’s son Leo has extremely complex health difficulties. Due to a family breakdown, Becky doesn’t have any family and friends who can help her care for Leo, so Nicky is a vital life-line to Becky when she needs it. 

“I hadn’t slept for nearly 2 years, I would just doze in between Leo’s medical alarms. I have no one, it’s just me and Leo,” she explains. Eventually, Becky suffered a serious breakdown and was referred to Rainbow Trust Children’s Charity, which provides dedicated support to parents of seriously ill children.

When Becky was first introduced to Nicky it took her quite a while to trust her. “Basically I don’t trust anyone. I have chronic depression and severe anxiety, so letting new people in to my home is hard. It took me a year to trust Nicky, but she was lovely. She kept coming back and was so supportive. I also have dyslexia which Nicky has helped with. She’s learnt when I don’t understand things and helps explain in a way that I’ll understand.”

Nicky got to know Leo carefully so as not to disrupt the close bond Leo and Nicky had. And as Nicky’s relationship with Leo grew, it also did with Becky. “Nicky was just so patient with me. I was quite open and honest at the beginning. I told her I don’t trust anyone, I don’t socialise, I don’t want anyone. I’ll support Leo through anything and be there for him, but sometime I just have to go and have a cry. That’s when I ring Rainbow Trust’s on-call service and speak to Nicky. It takes a long time for someone like me to trust someone and I trust Nicky. I’ve never had that before in my life.”

“Without Nicky I think I just couldn’t do it. When I get really wound up and can’t cope with the stress and stuff that all the other services put on me I speak to Nicky and she just listens to me. She reassures me and puts things into perspective.

"he most important thing about Rainbow Trust is just to know there is someone there that you can trust; that are open and honest with you. They can help you and guide you.”

Your donations are making a wonderful difference to Becky by funding vital Family Support Workers to care for families struggling to cope with their child’s illness. Thank you. 

My little girl Emily was diagnosed with leukaemia when she was eight years old. I was referred to Rainbow Trust, because I was alone, with little support. I was struggling to carry on with everyday things while worrying about Emily’s treatment. A Family Support Worker called Sarah came round to give us practical support, and Emily adored her straight away.

When Emily’s with Sarah, I don’t have to worry about her, all I hear is laughter. She’s so easy to talk to. I can ask her if Emily’s alright, as she opens up to Sarah and she can tell me if there is anything I need to know. I can also tell her if I am having a bad day. The hours she gives us means we have some normality again and Emily needs that. With Sarah, I feel like a load of bricks has been lifted off of my shoulders.

I remember that first day, I didn’t know what to do with myself. She told me to go shopping for two hours – I was standing in the middle of the supermarket with my trolley feeling guilty for leaving Emily at home.

But Sarah’s help gave me that breathing space that I hadn’t had since Emily was diagnosed. I didn’t think this kind of practical help would make a difference but it really does. She’s made life more bearable which I didn’t think was possible.

Sarah deals with children like Emily every day. She can help with advice and knows what to do in a crisis. I trust her with Emily, my precious child. Everyone in that situation should have a Family Support Worker. I can’t thank Rainbow Trust enough.

Sophie and Matthew were devastated when they were told that their baby boy had two holes in his heart. Alfie underwent open heart surgery at just seven months old to repair the holes in his heart.  

A few months later, Sophie fell pregnant with their second child, Frankie, but when Frankie was just six months old, Alfie was diagnosed with leukaemia. “Frankie practically lived with Matthew’s mum,” remembers Sophie. Trying to juggle a new baby and hospital appointments was close to impossible but the family did their best to take care of both boys.

Matthew was going backwards and forwards to the hospital trying to work and see Alfie and Sophie. We only ever saw each other as we were passing, either coming or going. It’s very lonely,” remembers Sophie.

Alfie responded well to the treatment and, once again, life settled down for the family. A few years later, Sophie gave birth to another baby boy but when Dennie was just one, Alfie relapsed.

Dennie was looked after by various family members while Sophie was in the hospital with Alfie and Frankie was at school. Matthew had to go back to work, Sophie would come home at weekends and Matthew would spend the weekend at the hospital.

“The first time around, I didn’t ask for help as I felt I was failing as a parent but this time, knowing what to expect, I knew I wouldn’t be able to be the parent I wanted to be without help.

“I heard about Rainbow Trust from a social worker. I asked her if there was any help I could have at home. I knew having Alfie at home in a wheelchair and the two boys would be very difficult.”

Jessica, a West London based Rainbow Trust Family Support Worker started visiting and supporting the family.

“I haven’t felt so alone this time. I feel I can pick up the phone to Jessica and say, ‘I really need you today, is there any way you can come?’ She always makes a plan to come and help.

“We feel like a family unit again, because I can spend time with my other children while she spends time with Alfie. Alfie and I have made a really good friendship with Jessica that will last a lifetime.”

Every donation you make to Rainbow Trust Children’s Charity will support families like Sophie and Matthew’s, for whom the simple things make a huge difference for the whole family. Thank you. 

When she was 11 years old, Corrie, the elder of Kirsty’s two daughters, was diagnosed with a rare cancer. The closest hospital for her specialist care was 60 miles away. The family had moved to Cumbria just a few years before and had no family close by. They spent that year juggling family life with gruelling chemotherapy on their own, with little help.

Sadly the cancer returned when Corrie was 13. Life was full of chemotherapy, tests and taking bloods. Kirsty was up all night and getting very little sleep – she was exhausted. There was no-one to help, no friends, no relatives, and the hospitals didn’t want them. Kirsty realised she couldn’t cope. She and her husband Edward were exhausted, and she realised they needed help. After a desperate call to their social worker, two Family Support Workers from Rainbow Trust knocked on their door. “At first, I wasn’t happy at all to accept the help of Rainbow Trust. My children and my husband and all my family expected me to be strong.”

When they explained that they provided emotional and practical support for the whole family, the tears poured down Kirsty’s face with relief. The very next day, a a Family Support Worker arrived carrying a huge box with games, activities, books, colouring utensils and the children smiled for the first time in weeks. Kirsty had the first full three hours sleep in two months. As Kirsty remembers, “this was the beginning of a very important part of our lives.”

Rainbow Trust helped by taking Corrie and her sister to the park, or the cinema, or bowling. Kirsty says. “You become over-protective so you don’t dare do anything that might risk your child, obviously.”

“When Corrie had six weeks of radiotherapy, five days a week, our Family Support Workers did one of the 120-mile round trips every week. Otherwise I would have to go on my own and not be with my other daughter, or Edward would have to take the day off work.”

After Corrie had recovered and successfully passed her A-levels, she secured a place at university to study nursing, and decided to take a gap year to travel. Tragically she was drugged, abducted, assaulted and left for dead on the island of Ko Samui in Thailand, and she returned home shattered. Kirsty says, “To our amazement Rainbow Trust heard about this trauma and once again came to our rescue.

“Sadly, within a year, a new cancer along with the old one, reared its ugly head. Rainbow Trust were with us throughout. By this time our family and friends were almost too shocked to know what to say. We felt isolated and alone. I was so touched that Rainbow Trust stayed with us, as Corrie was 20 years old now. But her brother and sister were still in need of support, as were my husband and I.”

Corrie left university when the cancer was diagnosed as terminal. She declined further treatment and married her boyfriend just five weeks before she died. Kirsty says, “Rainbow Trust stayed close by us until we felt we could go on without their support. They helped me to plan and think about Corrie’s death. Without them, the whole process of grief would have been much worse and our family would have been less cared for. We would have more regrets. I certainly have fewer regrets.”

Thank you for supporting families like Corrie's through such tragic times. Your donations give more families access to vital emotional support for as long as it is needed.