Brave Harley lived life to the fullest (From Daily Echo)

Brave Harley lived life to the fullest

1:00pm Monday 11th March 2013 in News By Patrick Knox, Senior Reporter

“He was a strong, brave and special boy.” Harley Blanchard-Rafter was one of a handful of children in the world to suffer from a debilitating rare genetic condition.

But his fighting spirit saw him defy all expectations to live his fragile life to the fullest. Today white doves will be released at a special service at Southampton Crematorium to celebrate the life of the seven-year-old from Chandler’s Ford.

His devoted mum, Lucy Blanchard, 27, said: “He fought and fought.

“Doctors used to make a joke about Harley that whatever they said he would do the opposite.”

When he developed pneumonia, Lucy said she was braced for the worst but did not want Harley to die in hospital surrounded by tubes and machines.

And in true Harley style he defied the odds and hung on long enough to make it to Naomi House children’s hospice where he had been since the age of 18 months. Lucy, who has being staying at the facility at Sutton Scotney near Winchester since he passed away, said: “It was right to bring him here.

“He waited until all his family were around him. It was very peaceful and we were very privileged to have that experience.

“I think he did that for me because I would not have coped another way.”

In his last hours Harley was spared the seizures that could strike as much as five times a day and he managed one more hand and foot painting amid his beloved lights and music.

Harley’s grandma Tereasa Blanchard, who moved from Spain to help care for Harley, added: “He was a very strong, brave and special boy.” Lucy said: “For a little boy who never took a step he touched a lot of people’s lives.”

People attending his funeral today will be wearing blue – the favourite colour of a boy who was at his happiest bathing in water.

Thanks to Harley’s spirit people gave up time and effort to fundraise for him. This saw his dad, Joe Rafter, scaling the summit of Africa’s tallest mountain, Mount Kilimanjaro.

It allowed him to travel to Disney Land Paris three times and Florida where he swam with dolphins. This was no mean feat because it required care support, oxygen and a specially adapted chair and transport.

After the funeral service Lucy will leave Naomi House where she has being staying since Harley passed away in February.

She said she could not dare to think how she could have coped without the care of the charity funded facility.

Now Lucy is no longer with Joe, and is looking ahead to a new life after losing her only child. She is studying for a BA in Photography in London. She said: “I will never achieve anything better than Harley but I hope I will do something to make him proud.”