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Dublin: 2 °C Friday 15 November, 2019
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'When I was born there was no hint of any disease'

One in every 3,500 boys are affected by Caleb’s condition.

WHEN I WAS born there was nothing really wrong with me. There was no hint of any disease or any muscular dystrophy, nothing like that. So I walked like any other child, I ran, I had a normal upbringing. There was nothing untoward … there was nothing really.

Caleb Lane started to fall over a lot at the age of three or four.

“I couldn’t even climb to the top of the bunk bed that we got. The back of my legs became hard, the calf muscles there. And the way I’d walk, it would be like walking like a ballerina – on my toes, so it was difficult for me to navigate around the house.”

Caleb’s mum brought him to Cork University Hospital, where he was diagnosed with Duchenne muscular dystrophy (DMD) at the age of five.

“The doctor asked me to get up off the ground … I had to grab on to the walls to support myself to get myself up and that’s a big sign that there’s something wrong.”

Caleb (now 23) recalls that doctors “didn’t know much” about his condition at the time.

image-e571666ea4a39d2878bf7c48c79422f8a58156260d0f21fd9ca868fcea17d4ff-V

Today is Duchenne Awareness Day.

DMD affects about one in every 3,500 boys. It causes the progressive weakening and wasting of muscles, the heart and lungs. The condition is one of more than 20 types of muscular dystrophy.

Muscular Dystrophy Ireland (MDI) currently has 110 members with Duchenne, just over 15% of the total membership (714 people).

A spokesperson for the organisation told us: “There are likely more boys in Ireland who either have not yet been diagnosed or who are not members of MDI, but those are our official figures.”

No cure

About 250,000 children are affected by the condition globally. Females can be affected, but this is extremely rare.

The first signs in difficulty walking occur between the ages of 1-3 years. By about 8 to 12 years, boys become unable to walk and will require a mobility aid or a wheelchair.

There is promising research in the area, but no cure. The average life expectancy for people with DMD is about 25 years.

Source: World Duchenne Awareness Day/YouTube

“For someone who doesn’t know much about DMD, how do I explain it? It’s a muscle-wasting disease. So it turns your muscles into fat so the structure breaks down into fatty tissue,” Caleb explains.

He said that an average day “can be quite an ordeal”. A carer helps him get dressed, eat and use the bathroom.

Caleb takes medication to help him deal with his condition and has doctors’ appointments every few months.

10525710_665915633496689_6128048690636490275_n Caleb and his family

He said his parents Jean and Bill, brothers Joel (21) and Luke (19), and friends have also been a great support – as have MDI.

“It’s been tough for my parents because my youngest brother has Down syndrome so having two disabilities in the family is quite difficult.”

My mum and dad have been there for me all the time. Especially my mum, fighting to get those PA hours, to get chairs and hoists. You’ve got to fight, if you don’t fight, you don’t get. Unfortunately that’s the way it is in modern Ireland.

Caleb loves to travel and when his condition meant he could not longer fly he began to go on cruises.

“It’s quite difficult to do, it’s quite an ordeal to get across the water … but it has been manageable.”

‘I just love writing music’

Music is another passion for Caleb, who volunteers at Cork-based Christian radio station Life FM.

He hosts his own radio show and released an album of Gospel music two years ago.

I’m a Christian and my faith is really a big part of my life … that gives me hope. Hope for the future and hope that I have a purpose, that there’s something bigger than myself which is very important because in myself I’m weak.

“I love singing … I just love writing music. Now it’s difficult for me to do, I can’t play instruments… My dream is just to write songs so someone famous can take it and make it their own.”

MDI CAMP KILCUAN Galway Photo:Andrew Downes, xposure Source: Andrew Downes

“I’m happy really because of my faith, that keeps me secure – knowing that my life has a purpose.”

Caleb said he hopes to release another album and is thinking about going to college.

He also wants to raise awareness of the DMD to show other people with the condition what they can achieve.

I’m a big believer in life and where there’s life there’s hope. That is my hope – to live. To be alive to do things with the short time I have.

More information on DMD is available here.

Read: ‘This is a do or die situation’: Family tries to raise €1m for son’s transplant

Read: Hundreds of people could have an excruciating skin disease but be too embarrassed to get diagnosed

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About the author:

Órla Ryan

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