Standing tall: The York schoolboy they said would never walk

NO-ONE watching 13-year-old Oliver Cundall walking carefully down a residential street in York could know how much each step means to him and his family.

But for Oliver's mother Rebecca, the very fact she is now able to walk down the road alongside her son is little short of a miracle.

A genetic condition had meant Oliver was never expected to be able to walk - until he caused astonishment when he suddenly took his first steps unaided at the age of 11. Two years on, he is now able to walk much longer distances and is close to being able to climb the stairs without support.

The Applefields School pupil has Phelan-McDermid Syndrome, a very rare condition which causes developmental delays and means Oliver is non-verbal and has low muscle tone in his limbs.

"When he was first born they said there would be developmental delay and I said 'oh well, if he doesn't walk until he's two or five, no worries,'" Oliver's mum Rebecca said.

But as the years passed by, and as countless attempts to support Oliver with his mobility failed, Rebecca said she stopped hoping that her son would ever be able to walk.

Everything changed when a friend recommended that Rebecca contact neurological physiotherapist Charlotte Foxton and her colleague Lynn Byas, a soft tissue therapist, of Physio Function in Fulford.

Charlotte suggested that Oliver should move away from using walking frames and supports and focus on his own strength, posture and balance.

"When I first met Oliver he was very low toned, he required two people to assist him to stand up and could only stand with assistance for short periods," Charlotte said, "He had little awareness of safety and could not save himself if he lost his balance. Although he had no verbal communication and would become easily distracted, I felt he was keen to please and work on his skills.

"Oliver has made fantastic, life changing progress with physiotherapy over the past few years."

Just over a year after he started visiting the practice, and after a lot of hard work, Rebecca received an excited phone call from Oliver's teacher at Applefields School, telling her Oliver had started to walk.

"I didn't believe it," she said, "I was told by his teacher Zsuzsi. She rang me up in the office at work and said Oliver has walked unsupported, completely on his own.

"I knew it was big progress but I didn't believe he wasn't hanging on to a finger or a piece of string or something."

But Rebecca and her husband James were delighted to realise that Oliver was able to walk unaided and over time he made incredible progress.

Rebecca said: "It was wonderful that every week after that when we came to Charlotte there would be another wow moment - he would do something [new]... it was just amazing and it still is actually."

It became a team approach and as his parents, who live with Oliver near Westow in Ryedale, and carers Laura Craven and Kate Miller, as well as his teacher Zsuzsi Gotts, got involved with exercises and practise, Oliver kept improving.

A high point came when Oliver's new found mobility meant he was able to walk down the aisle as a pageboy at Laura's wedding.

Equally life changing has been the fact that he is able to understand more of what is said to him. "What has amazed us is his ability to now listen and understand us more. Rather than sit and play with his fingers like he used to do, he will listen to our conversation and clearly understands several words," Charlotte said

"The best thing about him being able to walk by himself is the fact that he now has more opportunity to make more obvious choices about what he wants to do. He doesn’t have the ability to speak and tell us what he wants but he can indicate this himself now, for example going to the back door if he wants to go outside. It has been fantastic seeing learn the skills of being able to decide things for himself and communicate, even if not with words.

"We feel we've been able to help Olly make more choices. So it's not just that he can walk, but he can use that to make more choices and understand better so he can have a better quality of life, and obviously there's health benefits to walking. His circulation is better, his digestion, his breathing.

"Olly is like a miracle to me. I always knew he would do well but he's done brilliantly."

Now Rebecca, who runs the business behind Thor's Tipi Bar and Yorkshire's Winter Wonderland with her husband, said she and Oliver hope to attend to an annual get together of other families with the same syndrome.

Oliver's achievements offer hope to other people in the same position, she said.

"It's absolutely beyond my wildest dreams that Olly can walk and can stand up, can stand and hold on to a basin," Rebecca said, "And for him to understand is an incredible breakthrough. The progress is just extraordinary.

"I'm just overjoyed, I'm completely overjoyed, because that's what I was looking for."

About Phelan-McDermid Syndrome

Oliver has Phelan-McDermid Syndrome (PMS) which is a rare syndrome, caused by a deletion, or loss, of a segment of chromosome 22.

Those with PMS have developmental delay.

Just over 130 people are diagnosed with PMS in the UK & Ireland, and approximately 1500 in the world. All people with PMS have difficulty communicating, many are non-verbal and most have low tone in their limbs. All people diagnosed with PMS need additional care to support their daily lives.

They often do not develop functional language and can have autism spectrum disorders. There are a wide range of severity of symptoms observed in people with PMS.