Seriously ill Lucy Gallagher is such a determined baby that her parents have told how they have great hope a cure will be eventually found for her condition.
Lucy, 17-months-old, was featured on television for the first time on Monday night, and her mother, Carleen, said she was looking forward to Lucy’s story being told to give heart to other families with children with additional needs.
It’s a heart-moving story. Lucy, an only child, has a rare and life-threatening skin condition which affects fewer than 100 patients worldwide. She is the only one battling it in Ireland.
Lucy, who lives in the Donegal Gaeltacht, has harlequin ichthyosis, a genetic disorder that means her body generates too much skin– 14 times as much as grows on other people– and it forms a kind of armor plate around the body.
The thick skin pulls tightly and causes constrictions. Lucy’s fingers, eyes, mouth, and ears are most affected.
The skin contains massive, diamond-shaped scales, and tends to be flaky and red.