07 May Chelmsford family support Rainbow Rock Campaign for Essex charity close to their heart
A family from Great Waltham in Chelmsford, whose 12-year-old son has a severe neurological disorder, are supporting a new colourful campaign from Rainbow Trust Children’s Charity, a local organisation that supports families with a seriously ill child.
Rainbow Trust has supported the Johnson family through their Family Support Worker, Abi Smith, who works in the charity’s Essex Care Team based in Pitsea.
Abi has provided support to the Johnson Family for the past four years, helping them care for their 12-year-old son Harry who has a life-limiting Mitochondrial disease called Leigh’s Syndrome. Abi helps the family emotionally and practically in a range of ways, including organising days out, collecting Harry’s two sisters from school and looking after Harry to give his mum some respite and spending time with her daughters.
Now the Johnson family are backing the charity’s new awareness campaign, Find Our Rainbow, launching in Essex on Saturday 15 May. The campaign encourages local residents to find gorgeous rainbow themed painted rocks in outdoor locations. Successful hunters are invited to post a picture of the rainbow rocks they find on the charity’s Instagram page @rainbowtrustcc, before re-hiding them for others to discover.
Harry’s mum Lucy has painted some of the striking rainbow rocks with her daughters Iris, nine, and Florence, eight, to show their support for Rainbow Trust. They hope to help raise awareness of the charity by hiding them close to their home for lucky local residents to find.
Mum Lucy Johnson says, “As an art teacher myself, I was really happy to get involved with this campaign to give something back to Rainbow Trust for all the amazing support we have received.
“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 says, “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!
“We hope that our involvement with the Find Our Rainbow Campaign will encourage other Chelmsford families to get involved and spread awareness of this brilliant organisation, that helps families at the toughest of times.”
Claire Coussins, Rainbow Trust Head of Engagement said, “We are so excited to be launching Find Our Rainbow in Essex. It is wonderful to have the Johnson family’s involvement through their beautiful painted rocks and through the family’s powerful story about their experiences of Rainbow Trust’s support.”