“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.”
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