‘I UNDERSTAND WHAT HE’S BEEN THROUGH’
‘I refused to put him into special care’
Kaddy Thomas, 54, is founder of elijahshopeforapert.org, aimed at helping families affected by the genetic disorder Apert syndrome. She lives in north Somerset, with her son, Elijah, 16, and is his carer.
I found out Elijah had Apert syndrome during a pregnancy scan. The condition causes an early fusion of the skull and prevents it from growing normally, affecting the shape of the head and face. Some people are born with their toes and fingers fused too.
Although it was a shock, I already knew a lot about Apert syndrome, as I’d been born with the same condition back in 1968.
My mother, who was only 22 and from Gambia, could not look after me. From the age of one onwards, I spent time in a children’s home and special school or lived with foster parents.
I’d had many surgeries at Great Ormond Street Hospital in London to widen my skull and help with the mobility problems I have. An underlying bone condition means my bones age faster and my muscles are affected.
I knew Elijah would face this too. But his birth in March 2006 was a time of great joy for me, even though I was a lone parent and we’d face difficulties.
For the first 18 months I had little help, but I fought for a support worker to come to our house for a couple of hours, to help me bath and put Elijah to bed.
He was such a lovely baby, and was babbling, swaying in his high chair, crawling and pulling himself up. But he had narrow airways and had trouble eating and breathing at the same time.
In October 2007, after he’d undergone a routine surgery to widen his skull, he contracted a brain infection which caused
catastrophic brain damage, leaving him motionless, unable to speak and eat.
As he lay in intensive care, just 18 months old, doctors told me that Elijah would either die or, if he recovered, would be brain-injured. Desperately, I willed him to live. I wanted my boy with me.
I was in shock and so angry, but I had to put Elijah first. Immediately, I became his carer. I refused to put him into special care and persuaded the local authority to let me organise a team of carers around the clock. There’s always somebody in our two-bedroom bungalow with me to provide 24-hour care.
Outside interests
Despite the trauma of what has happened to him, Elijah is now 16. He is strong and courageous, and a brilliant communicator, even though he’s non-verbal. He uses Eye Gaze technology, which communicates through blinking of the eyes, and this is how he shows his personality.
He’s quite dry and really funny. He loves listening to jazz, R&B and pop, and attends a music workshop. He’s a Marvel geek and loves going to the pictures, and he even has an eye for the ladies!
He’s a bit of a wind-up merchant too, and if you tell him a sad story, he often laughs!
He’ll be starting college soon for one day a week
– he likes science and loves to learn. He’s such an amazing young man.