Elijah’s story

Elijah is a strong, brave and courageous young boy who suffers from Apert Syndrome, a congenital disorder characterised by deformities of the skull, face, hands and feet.

Apert Syndrome affects less than one in 150,000 people. It commonly results in an abnormally shaped head and face. This occurs when the developing bones of the skull fuse together too early; in some cases the brain does not have room to grow properly

Elijah as a baby

Elijah as a baby

Aged just one, Elijah underwent surgery to treat the rare genetic condition. He later developed an infection at the wound site, which left him suffering from severe brain damage.

He is now wheelchair-bound and also suffers epilepsy, scoliosis and a seriously distorted body shape – the impact of which means his left lung is being squashed. Elijah also has a high muscle tone, which has caused both hips to dislocate, he has excessive secretions affecting his breathing, he cannot eat or drink orally and in addition has osteoporosis, a heart murmur and a cleft of the soft palate.

Apert Syndrome is hereditary, and something that his Mum Kaddy also suffers from, although she is largely able to live a healthy life herself.

Kaddy said: “Elijah is a strong, brave and courageous young boy who, despite what he has been through, continues to amaze me.

“I have faced horrendous ordeals during the enduring months Elijah was hospitalised and now I want to help others, so they don’t have to endure the same.”

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