Bristol Mum Raising Awareness for Apert Awareness Month

Kaddy Thomas, founder of Elijah’s Hope, is keen to raise awareness of Apert syndrome over the next month during the worldwide awareness campaign.

Apert syndrome is a genetic disorder characterised by skeletal abnormalities. A key feature of Apert syndrome is the premature closure of the bones of the skull (craniosynostosis). This early fusion prevents the skull from growing normally, and affects the shape of the head and face.

Kaddy explains more,

“I was born with Apert syndrome, as was my 14-year-old son, Elijah. My own experience of this genetic condition is probably more typical of what life with Apert is like, but Elijah’s experience has been more complicated due to a brain injury sustained following surgery when Elijah was 18 months old. Elijah now needs 24-hour support from a large team of healthcare professionals due to his complex care needs. The media insists on using the term ‘Broken Doll’ to describe Apert and it’s a term that I dislike because it suggests we’re damaged in some way. People often treat us as such. I wonder how many other families are going through similar experiences or who are struggling with a different aspect of life with Apert, including preparing for surgeries or making their way in a world that tells us conventional beauty is everything.”

Elijah’s Hope was born out of Kaddy’s lived experience. She now supports children, young people and families affected by Apert syndrome via an online community, blog, social media, resources and signposting to available services.

If you need any support or further information about Apert, please do contact Kaddy via: https://www.elijahshopeforapert.org/