Charlie Agius has to use a walking stick to keep his balance but this will not stop him from taking part in tomorrow’s walk to raise awareness about the condition he suffers from. Up until a few weeks ago the 51-year-old thought he was alone. Then he read the story of two-year-old Gabriel Abela who suffers from a degenerative condition similar to his, called leukodystrophy.
“When I read the article about Gabriel and his mother, Marcelle, in The Sunday Times of Malta, I wanted to contact them. I did and we met up.
[attach id=369787 size="medium"]Charlie Agius will be joining tomorrow’s awareness-raising walk with Gabriel. Both suffer from different types of the degenerative condition known as leukodystrophy. Photo: Matthew Mirabelli[/attach]
“I told [Marcelle ‘I will stand beside you’. I can’t let her fight alone when, whatever she achieves, I could benefit from,” Mr Agius says as he stretches out his T-shirt to ensure the face of Gabriel printed on it is clearly visible.
The T-shirt shows the boy’s smiling face and the words Sunshine for Gabriel: the name of the Facebook page and awareness campaign being organised by his mother and other relatives and friends.
The campaign, which includes tomorrow’s walk, aims to raise awareness about leukodystrophy; a group of genetic diseases affecting the myelin of the central nervous system.
I can’t let her fight alone when, whatever she achieves, I could benefit from
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.
When Gabriel – the youngest of three children – was 10 months old he was diagnosed with cerebral palsy, a disorder that affects muscle tone, movement and motor skills.
An MRI scan revealed that the cerebral palsy was combined with leukodystrophy, which affects one in 400,000 children.
Gabriel has to undergo a range of therapy sessions, including speech and physiotherapy, and his mother has called for better support for leukodystrophy patients, including offering therapy at home.
The campaign is also urging people with the condition to come forward. Ms Abela was thrilled when Mr Agius did so just a few days after the article was published.
Mr Agius was diagnosed with adrenoleukodystrophy (ALD) on September 3. Before that he did not know the name of the condition that had been gradually robbing him of his mobility for the past seven years.
Adrenoleukodystrophy causes damage to the membrane surrounding nerve cells in the brain, known as the myelin sheath. The result is very long-chain fatty acids, which the body cannot break down, causing high levels of saturated fatty acids to build up in the brain, nervous system and adrenal glands.
Seven years ago Mr Agius started realising something was wrong.
“I’d try to run. My mind would want to run but I couldn’t. The most I could do was walk fast,” he says.
An MRI scan showed an abnormality in his brain. As the years passed, his mobility decreased and he had to stop working. He now walks with a stick or uses a scooter for long distances. He is still trying to understand exactly what his condition means in effective terms.
“All I know is that there is no cure and it has gotten worse,” he says. “I’m like a boat drifting in the ocean. I have no idea where I’m headed. I don’t know what to expect.”
He is joining Gabriel’s call for personalised treatment and awareness and is also urging people diagnosed to come forward. As he holds a framed photograph of himself and Gabriel, taken two weeks ago, he says: “When I look at this photo I feel happy. Then I remember that both this little boy – with the gorgeous smile – and I are sick.”
Tomorrow’s walk will start at 6pm from George Bonello du Puis garden in Qui-Si-Sana.
Proceeds will go to the Malta Community Chest fund.