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“Just knowing that Forget Me Not is there for us makes a big difference.”

Melissa’s family’s world revolves around their 5 year old daughter. “Our daily routine depends on Melissa, everything depends on Melissa,” says sister Melika, who’s 18. And like all of the families we support, they wouldn’t have it any other way. “She’s our gift from God.” But that doesn’t mean that caring for a child with complex health conditions isn’t really hard, demanding round-the-clock care. 

Melissa has microcephaly, a rare birth defect that can cause major brain development disorders. She has problems with her liver function, visual impairment and she is wheelchair-bound. She also suffers seizures and doesn’t sleep. “She wakes more than 20-30 times during the night so we don’t get much sleep as a family. It’s like a hospital – we each take turns to check on her, like we’re doing shifts.” 

Luckily the family found Forget Me Not. “Before Covid, Melissa would stay overnight at the hospice a few times a year and also go in for day care every other week. It gave us the chance to get a good night sleep and do things that otherwise are really difficult – like going shopping.” Forget Me Not has continued to be there for the family even though, during lockdowns, Melissa wasn’t able to visit the hospice. “We’ve taken part in the activities put on by Forget Me Not, like the creative box and the World Book Day story. Just knowing that Forget Me Not is there for us if we need help makes a big difference.”

Melissa loves splashing around in water “she’d stay in our hot tub all day if she could!” and likes to help her sister with her piano-playing. “She’ll sit on my lap and put her hands forward to play.” Melika’s keen to help Melissa with her development so she and the family were delighted when this very special little girl recently placed all of her fingers on the keyboard for the very first time. Mum Mona says, “this has given us life, courage and warmness in our heart.”

 

There are no limits to what Forget Me Not Hospice will do for families like Melissa’s.

More and more families like hers need the help of children’s hospices, and the hospices need to be supported to continue.