Brave Frankie loses last battle

Brave: Kim Robinson and Sean Forgione with their son Frankie Forgione
Brave: Kim Robinson and Sean Forgione with their son Frankie Forgione

A Leyland youngster born with a rare condition which meant he couldn’t be cuddled has died.

Frankie Forgione, of Farington, who was 16-months-old, had a rare neurological disorder called Krabbe Leukodystrophy.

It affects just one in every 100,000 people, with sufferers rarely living beyond the age of two.

The disease meant loving parents Sean Forgione and Kim Robinson were too scared too cuddle Frankie as his body was so sensitive it would leave him in agony.

The couple hoped a new nerve pain hypersensitivity drug would improve their little boy’s pain. Sadly, Frankie’s incurable condition claimed his life before the medication could help.

Dad Sean, 27, who works in maintenance for the Highways Agency, said: “Frankie had a high temperature on New Year’s Day and he lost colour and we were on and off the phone to the hospital.

“Then he just suddenly stopped breathing. It was incredibly sad, but very peaceful and at least he was at home surrounded by all his family.

“I think he’d just had enough and was too tired. He had fought and fought throughout his short life, but this was one battle too many.”

Frankie was born in August 2009 and seemed a happy and healthy baby. But he began to lose all his abilities and soon lost his head control, leaving him no longer able to smile or laugh.

At the age of three months, doctors discovered he had the rare genetic disease.

The condition affected Frankie’s ability to open his eyes, smile or lift his head and he had to be fed through a tube in his nose and required around-the-clock care.

Mum Kim, 29, said: “I am so proud of Frankie and I miss him terribly and will always carry him in my heart.

“I am so glad I was his mummy and even though I know he is now no longer suffering, a selfish part of me wants him back.

“When he died, it was very bittersweet. We were devastated, but it was lovely to have our final moments with him and have him on our knee and cuddle him without him being upset.

“It was such a cruel disease as Frankie looked like an absolutely perfect little boy, but he couldn’t do anything and lost the ability to smile, move or swallow after his diagnosis.

“It was always really difficult as we desperately wanted to cuddle Frankie, but it would cause him too much pain.

“But we did manage to enjoy the odd cuddle with him and will always have our memories.”

Sean said: “We knew when Frankie was diagnosed that there was no cure for what he had, but we always hoped this day would never come and it is something you can never fully prepare yourself for.

“He went through so much and touched so many people’s hearts. Everyone is devastated at his death.”