Bognor Regis dad set to scale the O2 to raise funds for baby son’s rare genetic disorder

“For three weeks they didn’t know what was wrong with him,” said his mum, Charmayne. “It was quite frightening.”

Then doctors discovered he had the genetic disorder Prader-Willi syndrome which affects just 2,000 people in the UK, has no cure and lifelong limiting effects.

Little is known about the rare, complex genetic disorder that affects both males and females from birth and throughout their lives.

Among the symptoms, it can cause low muscle tone with consequent motor developmental delays, a mild to moderate learning difficulty and, during childhood, an overwhelming and insatiable chronic appetite usually develops which, without rigorous food management and exercise regimes, leads to food seeking, stealing and life threatening obesity.

Axton is now ‘doing well’ after plenty of physiotherapy, is on daily growth hormones and is under a dietician in Southampton.

His dad, Luke, who works at Barfoots, is taking on a challenge to raise funds for the Prader-Willi Syndrome Association UK charity to raise awareness and funds for research. He will be scaling the O2 at the end of April.

“Since Axton was born it has been very challenging and Charmayne in particular has spent a lot of time researching and trying to find out things for ourselves,” he said.

“The PWSA has really been a massive help for us. We wouldn’t know where we were without them educating and supporting us to do the very best for Axton and we want to give something back to help these important lifelines to continue to be available for others.”

Charmayne said: “We have had to educate his doctors and carers about his condition and needs because of how uncommon it is.”

As to the O2 challenge, Luke said he was no fan of heights and had been ‘too scared’ to actually look at what he is in for on the day.

To make a donation go to Luke’s PWSA UK fundraising page at justgiving.com

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