A little boy was given a diagnosis 20 times rarer than Down's Syndrome after his parents became concerned when he would stare into space and get chest infections. Adam Ward and wife Rebecca welcomed Max in March 2021, their second child.
But, after a few weeks, Max started to routinely get chest infections. His mum and and dad also noticed that he would stare into space, rather than at them.
Their concerns led them to be "constantly" going to and from hospital. Then, after multiple tests and different potential diagnoses, Adam and Rebecca were told that Max had one of the rarest medical conditions in the world.
Angelman Syndrome affects around one in 20,000 births - 20 times fewer than Down's Syndrome, which is also a genetic condition. But, while Down's Syndrome can be detected during pregnancy, Angelman doesn't present symptoms until at least six months after birth, reports the M.E.N.
Adam said: “He had chest infections, that was the main thing. He would go in with an infection and four weeks later we would be back.
“We did realise a few weeks later he would not look at you and stare into space. It was only because he was constantly being admitted at Oldham that they sent off for the genetic tests. Then we had the tests and he got the diagnosis.”
Max was first diagnosed with absence epilepsy, where he would ‘blank out’ for a few seconds before coming back round. After genetic tests came back, the data confirmed that his maternal chromosome-15 had been ‘deleted’, Adam added, confirming his Angelman diagnosis.
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“The main symptom is delayed development,” Adam said. “My little boy is nearly two but he cannot sit up yet. There are delays in his motor skills and in walking and crawling.
“That’s what we are dealing with at the minute. He can communicate, but not in any spoken words. He might say a few words, but he is non-verbal. He will learn to communicate with an iPad.”
And Max ‘has struggled with not being able to control food going down his windpipe’, which was the cause of his chest infections — as food and milk were going to his tiny lungs, Adam explained. “Your body cannot know about that yet.”
Today, the tot is ‘happy’, and the family, from Bamford in Rochdale, is adapting. Adam, who owns tech firm Airtime Rewards, continued: “Adapting things is how we do it. We have equipment at home to help him stand. We do a lot of physio at home, and he needs to have the right shoes on to support him.
“It does take over your world a little bit, but it’s what you do for your kids. He has speech and language therapy.”
And, thanks to a favour from Canon Nigel Ashworth, Manchester Cathedral will be lit up blue today (February 15) as a way to raise awareness of World Angelman Day. Civic buildings in Leeds and Warrington are also taking part.
You can read more about Max's story, and donate to his foundation, online.
