The rare condition that means a York boy can never tell his mum he loves her

York charity Family Fund is helping children with disabilities like three-year-old Dylan Fox have a better quality of life. Catherine Scott reports.
The Fox family from York   , Kate , Eli 7 ,  Craig and Dylan 3 Picture: Gary LongbottomThe Fox family from York   , Kate , Eli 7 ,  Craig and Dylan 3 Picture: Gary Longbottom
The Fox family from York , Kate , Eli 7 , Craig and Dylan 3 Picture: Gary Longbottom

Little Dylan Fox loves a cuddle with his mother, but he will never be able to tell her how much he loves her.

Three-year-old Dylan has a rare genetic condition called Angelman syndrome. After a straightforward pregnancy and birth, his mother Kate began to notice delays in his development as a baby which concerned her.

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“It was like someone had pressed pause,” says the mother of two.

Dylan Fox, three, has Angelman SyndromeDylan Fox, three, has Angelman Syndrome
Dylan Fox, three, has Angelman Syndrome

Dylan had extreme reflux, squints first in one then both eyes, and was struggling to sit up at nine months. His movements seemed jerky and somehow “different”.

Eventually they were referred to a paediatrician and Dylan was offered genetic testing. When he was 15 months old the doctor confirmed that he had Angelman’s, a syndrome that involves profound physical and learning disabilities that will affect him for life.

“It was a very difficult time, we had actually suspected this syndrome because we had researched his symptoms on the internet – although I know you are not supposed to do that,” says Kate, from Acomb, near York .

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“But we couldn’t be sure, and there is a wide variance in how severely it affects different people. Unfortunately Dylan has the most severe variety, which means he will be unlikely to talk and may not walk independently, needing a wheelchair.

The Fox family from York    Eli 7 , Kate ,  Dylan 3 and CraigThe Fox family from York    Eli 7 , Kate ,  Dylan 3 and Craig
The Fox family from York Eli 7 , Kate , Dylan 3 and Craig

“As a mum, I’d gone from thinking – well if he does has a severe squint he might not be able to be a pilot or a policeman, to, so I’ll never be able to have a conversation with him. Your whole world changes, you think – what’s going to happen to them, will his brother be looking after him one day?”

In terms of his day-to-day life, Dylan needs a high level of support with most areas which his father Craig, who has given up his job, provides as his full- time carer.

“He needs constant supervision – for example, the other day I was visiting a friend with a two-year-old, and Dylan had to be watched and supported more than that child did – so I have to physically hold and cuddle him, he will try and eat sand or grass if I don’t stop him, if he wants to walk I have to hold his hands and support his weight. It’s that high level of supervision and vigilance that he needs round the clock that can be very draining.”

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On top of the daily challenges of life there are also dozens of appointments – for his eyes, he sees a physiotherapist, occupational therapy, orthotics for his feet, the wheelchair team, the paediatrician, feeding specialists, dieticians, speech and language therapy.

Dylan Fox out enjoying the summerDylan Fox out enjoying the summer
Dylan Fox out enjoying the summer

“One week alone, he had seven appointments. It can very intense,” says Kate. And then there is the extra cost of having a child with disabilities,

“In terms of the cost of raising Dylan compared to a child without disabilities, it can mount up very quickly. So firstly, my husband has had to become his full-time carer, which means we are one salary down.

“Then there are specialist items due to his needs; specialist foods, he chews things like his cups which regularly need replacing, he has special chewing ‘toys’ to satisfy his sensory needs.”

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Dylan also has a specialist bed which the NHS provided because he could injure himself without one, but to enable the family to have a night away visiting relatives with Dylan and his big brother Eli, seven, they needed a special travel bed.

“They cost around £400 so that means unless you can afford it, you can’t take your child away from home overnight at all.”

The family applied to York-based national charity Family Fund for a grant to buy a travel bed.

“Thankfully, this was something that Family Fund could offer us support for. We were able to get one that’s ideal for Dylan, like an inflatable tent almost, which is safe and really appealing for him to crawl inside. Having the freedom to go and stay with our parents for a few nights – or take the boys away so Eli gets a break, that’s what difference it makes.”

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Family Fund also gave them a grant for an iPad with a specialist communication software, and sensory games which Dylan loves.

“As much as funding the iPad was the fact they also funded some IT support to help us access all the applications on the iPad. Dylan absolutely loves being on the iPad and as well as relaxation it we use it as an incentive for him to use his standing frame which is good for his strength and his bowel movements. We cannot thank Family Fund enough. These may sound like relatively small things, but they make such a huge difference to Dylan and to us as a family. We would not have been able to afford to buy them without the charity’s help.”

Huntington-based Family Fund is the UK’s largest charity helping disabled and seriously ill children from low income families.

Demand for its services surged nationally by 42 per cent in 2020/21.

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The charity made over 10,000 grants to children across Yorkshire and 225 in York alone.

CEO of Family Fund, Cheryl Ward, said: “Children like Dylan are at the absolute heart of what Family Fund does – making grants which enhance the lives, opportunities and freedom of disabled and seriously ill children. His story represents one of the 10,000 children we support every year in Yorkshire alone.”

Family Fund will take to the water on September 12 as part of the York Rotary Dragon Boat Challenge which has been held annually since 2003 and takes place on the River Ouse between Scarborough Bridge and Lendal Bridge.

Over the past 18 years the cumulative amount raised by York Rotary Club for local charities is over £1.2m.

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Family Fund is one of just a few local charities benefitting from the event, which will allow them to help more children like Dylan.

“Dylan loves a cuddle, always wants to wrestle about with you. For his older brother Eli, it can be hard for them to play together as a seven and three-year-old usually would, but Eli is brilliant and he encourages him to reach for this or that toy,” says Kate.

“We don’t know how much his learning disabilities will affect him, 
he is starting to understand what 
some words mean, but he will go to a special school where he can get a higher level of support and tailored activities that he can get the most out of, such as swimming and accessible trampolining to build his physical skills. Life has changed completely and it can be lonely, it’s hard to feel that people understand what you’re going through sometimes. But the other side of that is how much Dylan has taught us.

“It’s made me realise what’s important in life – if the car breaks down you don’t care as much, you know what matters and what doesn’t. I know now that out of nowhere, life can change forever. I’m grateful for our family life – I’m grateful for every day.”

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Huntington-based Family Fund, the UK’s largest charity helping disabled and seriously ill children from low income families, will take to the water with 36 other Dragon Boats to race for victory in the annual York Dragon Boat Race on September 12. This year marks the 100th anniversary of event organisers, York Rotary Club, which was founded in 1921, and returns after being cancelled due to coronavirus restrictions in 2020.

Family Fund will be raising money to support its work with seriously ill and disabled children in Yorkshire and across the UK, after seeing demand for its services surge by 42 per cent in 2020/21.

The charity made over 10,000 grants to children across Yorkshire and 225 in York alone

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