Two-year-old Gabriel crawls over a large banner, promoting a walk to raise awareness about a rare degenerative condition, and slaps his hand across the image in the centre – a picture of his smiling face.

He then calls to his father, Mario Abela, who immediately understands what he wants – Gabriel, who cannot walk alone, wants his father to hold his hands so he can pace around the room.

“They call them woollen children,” his mother, Marcelle, says, adding: “Because they are so delicate and fragile.”

They told me: You’re up against a monster of a disease

Gabriel – the youngest of her three children – suffers from leukodystrophy that refers to a group of genetic diseases affecting the myelin of the central nervous system. Myelin is made up of a fatty substance that insulates the nerves. This insulating layer allows electric signals to travel correctly through nerves. Gabriel’s protective layer is weakening.

“This happens to everyone with old age. But in Gabriel’s case it is happening now.

“We are told that, with leukodystrophy, a young child is born into an ageing body,” she said.

When Gabriel was six months old, his mother realised he was not hitting the developmental milestones. Eventually, at 10 months, he was referred to a neurologist who concluded he had cerebral palsy – a disorder that affects muscle tone, movement and motor skills.

But an MRI scan revealed that the cerebral palsy was combined with leukodystrophy, which affects one in 400,000 children. As she tried to better understand the condition, and having lived in Australia, she contacted the Australian Leukodystrophy Association.

“They told me: You’re up against a monster of a disease,” she recalled. “I couldn’t get myself wrapped around the whole thing.

“The norm of life is that we raise them and they go to our funerals, not we go to their funerals. That’s what leukodystrophy is about. The parents, overall, go to their kids’ funerals.

“It’s like living with a time bomb. At the moment he is stable,” she added.

“But kids with this condition can be in pain, their bodies won’t accept food, they can’t breath – and you just have to sit there and watch and can’t do anything.”

But Ms Abela and her family soon realised there is something they could do – raise awareness about the condition and the need to support families living with it.

Two-year-old Gabriel and his mother Marcelle Abela. Photos: Darrin Zammit LupiTwo-year-old Gabriel and his mother Marcelle Abela. Photos: Darrin Zammit Lupi

These families need support and government could help tremendously by sending therapists home since these were terminal children with weak immune systems.

“I don’t want people to feel sorry for us. I want them to understand us,” she insisted.

Ms Abela set up the Facebook page Sunshine for Gabriel and is organising an awareness-raising walk on September 26 that will start at 6pm from George Bonello du Puis garden in Qui-si-Sana.

Proceeds will go to the Malta Community Chest Fund.

“We know there is no cure. You can’t sugar-coat leuko­dystrophy but I need to do something while Gabriel is here.

“I know what’s going to happen eventually. I want to give him the best and I’m calling for support,” she said.

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