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.
Jan 19, 2017

Krismia and her family

Krismia, Noreen and Kourtney
Krismia, Noreen and Kourtney

Krismia was three when she was diagnosed with Acute Lymphoblastic Leukaemia (ALL). Krismia’s mother, Noreen, recalls when Krismia was first diagnosed: “It was very sudden. I got a call at work from my husband, Ephraim, asking what the lump was on her neck was. Our doctor arrange for some blood tests at the hospital and the results showed that she had leukaemia.”

The family, who are from Zimbabwe, had very little experience of cancer and it took Noreen quite a while to accept what was happening to her daughter. “I’d heard of cancer, but all I really knew about it was that people who have cancer die. She was only three, was fine one minute and then the next thing our whole life had just changed overnight”.

Krismia’s illness put a lot of pressure on the family and they were very stressed: “At first we didn’t know what was going on, what was going to happen. When Krismia was diagnosed on that Friday, the doctors wanted to start her treatment immediately and we ended up staying in hospital for the next two weeks. 

She was eventually discharged and had to go back to hospital 3 times a week for treatment. By this time, Noreen had given up work to look after Krismia and Ephraim had to take more time off to take her to hospital. Finances were massively strained.

Noreen says, “we still had our mortgage to pay and things were really tight. Sometimes we were struggling to feed ourselves. When you are in hospital 3 times a week, or when we had to go there for 2 weeks in a row as we had to a number of times, we couldn’t afford to eat there. The hospital provided meals, but only for Krismia. Noreen remembers this as a very lonely time for the family and they were almost at breaking point when they were referred to Rainbow Trust.

“We had no one to turn to for help. We didn’t know anyone and it was very hard. Our other daughter Kourtney was only one at the time. At first my sister was going to come from Zimbabwe to look after Kourtney so I could go with Krismia to hospital and Ephraim could work, but she couldn’t get a Visa. We then decided that we had no choice but to send Kourtney back to Zimbabwe to be looked after by relatives. I hated the thought of having to be that far away from my baby and for her not to have her mum and dad with her. But it was becoming our only choice. We felt so alone and I felt really down.”

The family were then referred to Rainbow Trust by the hospital, who told Noreen they could help with transport and emotional support. “As soon as we heard they could help us, we were desperate for them to start straight away. When Tori, our Family Support Worker, came, everything was alright.”

Tori would take Noreen, Krismia and Kourtney to medical appointments, allowing Ephraim to work and taking away all the stress of getting the train to hospital. “Tori made a huge difference to us, I don’t know what we would have done without her. She is great with the kids and they love her, they’re always asking ‘are we going with Tori’ when they hear the doorbell ring. She’ll also come to our house and play with the kids which lets me get some sleep.”

Krismia is now on maintenance which means she only has to go to hospital a couple of times each month and she is looking forward to starting school this year. Things are now a lot calmer at home but Noreen reflects that it could have been very different without Rainbow Trust.

“I honestly don’t even know where we would be without Rainbow Trust. I never thought I’d see Krismia play and be smiley again. Now when we have to go to hospital it is no longer stressful, in fact the girls look forward to it as they get to see Tori and spend time in her car. I guess you just don’t know what to do or how you will cope until you have Rainbow Trust supporting you.”

Jan 19, 2017

Corrie's story

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. 

Jan 19, 2017

Niamh and Linda

Storytime for Linda and Niamh
Storytime for Linda and Niamh

Niamh was a typically active little girl until she was 18 months old. She could crawl, stand up, was trying to walk, could eat solid foods and play like other children her age. Her parents, Claire and Peter, noticed that this changed one day when she suddenly couldn't do all of those things anymore. She stopped crawling and would choke on solid lumps of food.
 
After eight months of stressful and worrying tests, Niamh was eventually diagnosed with Metachromatic Leukodystrophy, a progressive genetic disorder resulting in the signals from her brain not being able to get through to her muscles via the central nervous system. 

A physiotherapist who had been working with Niamh contacted Rainbow Trust Children’s Charity, and Family Support Worker Linda came into the family's lives. 

“Linda phoned to say hello and to arrange a time to come round for her first visit. I could have held onto her all day, with the relief at being able to talk to someone freely about Niamh and what it was like dealing with the diagnosis we had waited so long for.” Claire, Niamh’s mum

Linda came to the house weekly and helped with Niamh’s care. Linda also spent time with Niamh on her own, giving Claire vital time with her older daughter, Isabel, who often missed out on important one-to-one time with mum because of Niamh’s condition.

“I felt like I was letting her down and wasn't there for her like a normal mum would be. That’s a huge benefit of having Linda's help and she has improved my relationship with both of my daughters.”

Niamh isn’t able to attend school due to the risk of picking up infections, but Linda brought along sensory equipment for Niamh to help stimulate and engage her, which she loved.

“After months of singing and seeing how much Niamh enjoyed it, Linda helped me arrange for Niamh to have special music therapy lessons. Another Family Support Worker, Sean, now sees Niamh fortnightly to give her a therapeutic music session. I couldn't believe it when Niamh started single along. I burst into tears and covered my little girl in kisses, I was so proud of her!” Claire, Niamh’s mum

Niamh is doing well generally though does struggle at this time of year because of the cold weather and Rainbow Trust will continue to support the family for as long they need.

 
   

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