This year Rainbow Trust celebrates its 25th anniversary. Founded in 1986, we have now supported thousands of families who have a child with a life threatening or terminal illness. With the help of the families who share their inspirational stories about the difference Rainbow has made to their lives, we have been able to raise our profile and tell more people about the valuable work that we do.
From the humble beginnings of two staff and a kitchen table to work from, Rainbow is now a national charity and supports over 1,000 families across England. Thanks to the dedication and hard-work of staff and volunteers, Rainbow continues to grow year on year and makes progress towards achieving its vision that one day all terminally ill children and their families will have access to a Rainbow Trust Family Support Worker.
To mark this anniversary, Rainbow will be holding special profile raising fundraising activities to make this year our most successful yet.
“Very often, parents caring for a child with a life threatening or terminal illness have very little frequent or close contact with friends or family outside the household. Few families have the luxury of being part of an active social network, providing them with moral support during times of emotional trauma and grief. Professional support is available for such families, but often exists outside the family home, making it difficult and strenuous to take part on a regular basis. Such isolation is incredibly debilitating.” Vivien Hollis, Early Support Coordinator for Bath and North East Somerset Children’s Services
This is the story of Tamiya, who is four years old and has a degenerative heart condition and is terminally ill and her mother single parent Maria, who is currently supported by our Bristol based Family Support Worker:
“I’m going through the worst thing someone can go through. Friends don’t understand and I don’t have anyone else. Rainbow Trust makes me feel that it’s OK to be upset and not to know what to do; they are there to support me and help me through this. I don’t know now what I’d do without them in my life.
“I don’t have any kind of support network. I did have a few friends but since Tamiya has been ill, they really haven’t been supportive. They don’t understand that I can’t always stick to a plan because my daughter might be ill. My Family Support Worker really showed me that she wanted to support me though, so it became easier to talk to her. I don’t have anyone else I can talk to so sometimes it feels like I’m going to burst; I get desperate for some comfort from someone. I once called the Rainbow Trust help line late at night; I felt so overwhelmed with emotion that I had to talk to someone. I thought as it was past working hours I wouldn’t get through to anyone until the morning but I was speaking to my Worker less than five minutes later. I can’t put into words how much that phone call meant to me. I needed to speak to someone so badly and my Family Support Worker was there for me in a dark time.”
Two year old Malachi Tyler was diagnosed at birth with Neurofibromatosis, a genetic condition which varies from one person to another even in the same family. Some people will be mildly affected with very few health problems while others will have some serious health problems making their daily life difficult.
When Malachi was just one, his parents first noticed that he was walking around furniture and he was diagnosed with muscle hypertonia and a MRI Scan was arranged at St Thomas Hospital in London.
Four out of six of Malachi’s siblings have NF of varying degrees so mum Emma wasn’t unduly worried when they were told that he had the same genetic condition. About two weeks after the scan, Emma received a call from the hospital to say that they would like to see them the following day. “I was very scared when doctor wanted us to go the following day. It was too much for me to bear and I wanted to know more there and then; there was no way that I could wait until the following day.” The doctor said that scan results showed Malachi had an optic glioma; a tumour that grows in various parts of the brain. The family went to the hospital the next morning and were told that their son had no sight in his left eye and limited sight in his right and that further deterioration should be expected. Malachi was immediately referred to the Royal Marsden Hospital in South West London to receive his chemotherapy and that’s where the family first heard about Rainbow Trust. Tori, one of the Surrey care team workers was assigned to the family and since that time, the family has never looked back.
At the end of last year, the worst happened. Emma noticed that Malachi was now walking into furniture and called the hospital for an urgent appointment. They confirmed what Emma knew, Malachi had gone completely blind, “Even though I knew that Malachi had lost his sight, it was a sad day when we got it confirmed by the doctors.”
“Over the last year, we’ve had some pretty dark days and we were all thankful that Tori was there to share them with us. When Tori visits, she will spend time with Malachi’s other siblings and has built up such a good rapport them all. Also Graham and I are grateful for her for the support she gives to us. She will pick up and take the children to school and has taken Malachi to hospital when we’ve not had access to a car. I know that I can call Tori whenever I need her if I need someone to talk too. We really appreciate the care and support Rainbow Trust has given us, in fact, I don’t know how we would have survived without it!”
Tori said: I enjoy working with the Tyler family because they really do utilise me and I believe that I’m making a real difference to the family and that’s what it’s all about.”
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