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Jakob's story

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Jakob was diagnosed with an extremely rare genetic disorder, MIRAGE, when he was six months old.

Rainbow Trust Family Support Worker Jen, has been supporting Jakob and his sister Freya and parents Nicola and Mark since April. Rainbow Trust Children’s Charity supports families who have a child with a life-threatening or terminal illness.

Jen visited Jakob every week to give mum some much-needed respite as Jakob couldn’t be left alone.

“Jen was amazing,” Nicola said. “She would come in for two hours’ a week and I would use that time for my sanity so I wasn’t so isolated. Without her I would have struggled a lot more. Sometimes I’d had very little sleep and I needed that time for myself or my friends.”

Freya and their older half-sister Caitlyn, 23, didn’t meet their brother until he was eight and a half weeks old

Yet Jakob thrives and the bond between Jakob and Freya is as strong as ever.

“They laugh together and get so excited when they see each other,” their mother said.

Photo credit: Sarah Thew Photography

The family is now appealing for people to donate to Rainbow Trust so more families caring for a life-threatened child can be supported.

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