Brave Lancaster boy dies, aged six

Ryan Stanford passed away peacefully in his sleep after contracting pneumonia.

Ryan, from Central Avenue, Lancaster, suffered from Alper’s Syndrome, a genetic disorder which affects both the brain and the liver. Tributes have been pouring in since Ryan’s death at the Royal Lancaster Infirmary on Tuesday morning.

Samantha Kenyon wrote on Facebook: “Goodnight god bless little man. Fly with the angels xxx.”

Ryan’s mum Anne posted a message on the family’s Facebook fundraising 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 was taken into the Royal Lancaster Infirmary on Sunday after suffering a decrease in oxygen concentration in his blood.

He returned to the hospital on Monday, when a chest x-ray confirmed he had pneumonia.

Ryan died in hospital at 5.30am on Tuesday.

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

“There was no indication that 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.

“It’s all we could wish for really.”

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: “A lot of families looked on him as an inspiration to have reached the age he did.

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

“The response we have had has been amazing to be honest. All the comments have been unbelievable.

“There are so many people around here who knew Ryan through the appeal. We have made lifetime friends.

“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, as well as an older sister, Megan, who will be 16 on Sunday.

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.

They set up The Ryan Stanford Appeal to raise money to fund research into Alper’s Syndrome in the hope that cures or treatment can be sought.

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.

They also have 11 runners taking part in this September’s Great North Run.

For more information go to www.ryanstanfordappeal.org.uk

A memory page has also been set up at www.justgiving.com/ryanstanford1