Family’s heartache as brave Ryan (6) dies

Ryan Stanford, centre, with his mum and dad Anne and Dave, sisters Megan and Jessica and brother Luke, taken Christmas 2014.
Ryan Stanford, centre, with his mum and dad Anne and Dave, sisters Megan and Jessica and brother Luke, taken Christmas 2014.
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A little boy who bravely battled a rare terminal illness and helped raise more than £140,000 for charity has died, aged six.

Ryan Stanford, who suffered from Alper’s Syndrome, a genetic disorder which affects both the brain and liver, passed away peacefully in his sleep after contracting pneumonia.

His mum Anne Stanford, who works in Garstang with her family at the long-established firm Capsticks, but now lives in Lancaster with husband Dave, has launched a charity appeal in Ryan’s name in the hope of securing more research into the disease.

She posted a message on the family’s Facebook fund-raising page for ‘The Ryan Stanford Appeal’ saying: “Our hearts are broken, our world shattered.

“But if there is one thing we can learn from Ryan, it is to be strong. Find strength and courage we didn’t know we had. He will leave a legacy of lives he has touched, changed and transformed.

“We are so forever blessed that Ryan was mine and Dave’s, we just wish it could have been for longer.”

Ryan wrote his own rule book the whole way through and led the way. Everything he did was unique

Anne Stanford

Ryan was taken into the Royal Lancaster Infirmary last week after suffering a decrease in oxygen concentration in his blood. He returned to the hospital last Monday, when a chest X-ray confirmed he had pneumonia, and died the following day.

Anne, 33, said: “It was completely unexpected. We were due to fly to Cyprus on Sunday for two weeks.

“There was no indication this would happen. It has come as a massive shock.

“We are just grateful that it was peaceful. If he had suffered liver failure it would have been far worse and more painful for him.

“No time is ever a good time but we are grateful in a lot of respects as to how it happened.

Ryan was diagnosed with Alper’s Syndrome in 2009 when he was just a year old.

It causes progressive loss of developmental milestones and severe epilepsy.

As a result of the illness, he suffered uncontrollable seizures, had to be fed directly into his stomach, had extremely low muscle tone and could not support his own head.

Due to the severity of Ryan’s condition, he had not been expected to live past the age of two, but defied the odds to almost reach his seventh birthday in August.

Anne said: “Ryan wrote his own rule book the whole way through and led the way. Everything he did was unique.

“There were so many people involved in his care; at the RLI, occupational therapists, physio, social workers, GPs, all his carers.

“If everyone hadn’t put the amount of time into him that they did, we wouldn’t have been here as long as he was.”

Ryan, who attended Bleasdale House School in Silverdale, has a four-year-old brother, Luke, and eight-month-old sister, Jessica, and an older sister, Megan, 16.

His funeral is expected to be held at Scorton St Peter’s Church, where he and Luke were christened and where Anne and Dave were married.

The couple have vowed to continue with their fundraising, which has so far seen more than £140,000 raised towards Alper’s research.

Forthcoming events include a charity golf competition at Heysham Golf Club on July 24. For more information go to www.ryanstanfordappeal.org.uk