Theo's story CHARGE Syndrome Genetic Disorders - Jeans for Genes

Theo's story

Theo who is now nine was diagnosed with CHARGE syndrome shortly after he was born. Babies born with CHARGE are often born with life threatening birth defects such as complex heart and breathing problems. Theo had swallowing problems and is now fed through a tube, as well as having had two heart surgeries before the age of two.

Theo has severe visual impairment and moderate hearing loss which has left him slightly delayed with his speech development as well as reduced fine motor skills making some daily tasks impossible for him.

The CHARGE Family Support Group received a grant from Jeans for Genes Day to fund a family weekend in 2016, providing information and social activities for families.