Apert syndrome is a rare, complex genetic disorder that causes by premature fusion, or early closure, of one or more of the sutures that separate the bony plates of the skull. It also affects the formation of the limbs leading to syndactyly where the fingers and toes are fused together when the child is born.
Most children with Apert syndrome have delayed developmental milestones, though this varies from child to child. Apert syndrome requires highly specialised treatment by a team of craniofacial medical and surgical subspecialists. This takes place over many surgeries and years meaning a difficult and disrupted life for the child and their family.
We decided to create Elijah's Hope for Apert syndrome as a resource and patient support system where families who have a child with the condition can find information and tips from other patients. Because the condition is rare,
If you have a great tip to share, let us know!
Elijah's Hope is registered as a Community Interest Company which means it is a non-profit organisation in the UK. Its founder and CEO is Kaddy Thomas, and it is governed by a Board of Directors.
Elijah’s Hope also runs Carers Collective - a community for carers offering support, solutions and Solution Focused Hypnotherapy group coaching.