Meet Harry and his family

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Harry and his family have been supported by Family Support Worker Abi for the past four years. She has helped his mum, Lucy, to care for her son, Harry, 12, who has a life-limiting mitochondrial disease called Leigh’s Syndrome.

Abi has helped the family emotionally and practically in a range of ways, including organising days out, collecting Harry’s two sisters, Florence and Iris, from school and looking after Harry to give his mum some respite and to spend time with her daughters.

Lucy, said:

Harry was diagnosed with Leigh’s syndrome at 22 months old. This was the day that my life changed forever and it was difficult to see a way forward.
We were referred to Rainbow Trust by our local children’s hospice, Little Havens, around four years ago. Abi our Family Support Worker started providing additional support to my family at a really difficult time and from day one her support has been invaluable to me. Initially I was nervous about how this support would work but Abi immediately put my mind at ease with her bubbly personality. Over that time Abi has provided myself and my children all kinds of support and she has helped me more than she will ever know.”

Throughout the changing COVID-19 guidance, Abi has continued supporting the whole family. Lucy said:

Over the last year or so, because of the restrictions, Abi’s support has not been as straightforward as normal, however, we have had lots of doorstep visits and during the months I was shielding with Harry, Abi often would ‘check in’ to see how we were doing. This meant so much at what sometimes felt like quite an isolating and monotonous time. All my children love seeing Abi and all really look forward to spending time with her. I don’t think that I could sing her praises any more!
"When Harry was first diagnosed I quickly realised that I needed to enjoy every single moment with him. Whilst having a child with a life-limiting disease is not what I had planned it has changed my life for the better. It has made me appreciate the smallest and most insignificant things. I have learnt to take one day at a time and to live for the moment."

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Continued support for as long as a family needs us

Continued support for as long as a family needs us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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