“My toddler’s gaze and chest infections led to an incredibly rare diagnosis”

The family of a toddler diagnosed with one of the world’s rarest diseases has opened up about how his seemingly innocuous symptoms led to an unclear diagnosis.

Adam Ward and his wife Rebecca welcomed Max into the world back in March 2021. Their second child, a family, was created with the appearance of a little boy in their family. However, a few weeks later, Max developed chest infections.

He also had a tendency to look into space and not make eye contact with his loving parents. Because of their anxiety, Adam and Rebecca went “constantly” to the Royal Oldham Hospital.

After a series of tests and multiple diagnoses, the couple was told that Max had one of the rarest diseases in the world. Now, shortly before his second birthday, Max will see Manchester Cathedral lit up in blue to raise awareness of Angelman Syndrome.

The disease occurs in about 1 in 20,000 newborns, according to the Manchester Evening News, which is 20 times less common than Down syndrome, another genetic disorder. Unlike Down’s syndrome, which can be detected during pregnancy, Angelman’s syndrome does not show symptoms until the baby is at least six months old.

For Max, chest infections were the first sign of trouble, and without making eye contact, Dad Adam explained, “He had chest infections, that was the main thing. He came in with an infection, and four weeks later we returned.

“After a few weeks, we realized that he would not look at you and look into space. Only because he was constantly accepted in Oldham was he sent for genetic tests. Then we had tests, and he was diagnosed.”

Max was first diagnosed with absence epilepsy, where he “passed out” for a few seconds before regaining consciousness. After the genetic tests came back, the data confirmed that his maternal chromosome-15 had been “deleted,” Adam added, confirming his Angelman diagnosis.

“The main symptom is developmental delay,” Adam continued. “My little son is almost two years old, but he cannot sit up yet. He has delays in motor skills, walking and crawling.

“This is what we are dealing with at the moment. He can communicate, but not by any spoken words. He can say a few words, but he is non-verbal. He will learn to communicate with the iPad.”

And Max “struggles with not being able to control food getting into his windpipe,” which was the cause of his chest infections – as food and milk entered his tiny lungs, Adam explained. “Your body can’t know about it yet.

Today the baby is “happy” and the family is adjusting. Adam, who owns tech firm Airtime Rewards, continued: “Customizing things is how we do it. We have equipment at home to help him get up. We do a lot of physical therapy at home and he needs the right shoes to support him.

“It takes over your world a little, but it’s what you do for your kids. He has speech and language therapy.”

And, thanks to the service of Canon Nigel Ashworth, Manchester Cathedral will be illuminated with blue light today (February 15) to draw attention to World Angelic Man Day. Civil buildings in Leeds and Warrington also take part.

You can read more about Max’s story and donate to his foundation online.

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