Hollie and sister

Families we support

16-year-old Jack has MECP2 duplication syndrome and severe epilepsy, which leaves him wheelchair-bound, unable to talk or feed himself. He also has a number of seizures every night. Single mum Sarah cares for Jack on her own but the support of Shooting Star Chase has helped her cope – and better still, feel part of a family.

14-year-old Elisha has type 2 spinal muscular atrophy (SMA), a disease that causes muscle weakness and progressive loss of movement. SMA is a genetic condition, but both parents must be carriers for it to be passed on and, even then, there is still only a 25% chance that the child will have SMA.

On top of the day-to-day struggles of caring for a seriously ill child, the Wheelers faced years of waiting for a diagnosis, accusations of abuse from healthcare professionals and homelessness. But thanks to their resilience, and with the support of Shooting Star Chase, the Wheelers haven’t let any challenge beat them.

Frank was born in 2008 and for the first three years of his life he was, as mum Rachel describes, “a regular little boy, very active”. Then in July 2011 he had his first known seizure.

Bev and Andy were overjoyed to welcome their first child Barney into the world in 2009 but at six months old Barney began experiencing seizures and was diagnosed with Lissencephaly.