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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.
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.
“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.
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.”
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.
Shouldn’t Brady be charged for withholding evidence?
Was rape a crime back then? Yes it was. Was the rape of a child a crime? YES. Cardinal Brady withheld evidence of serious crimes, and ENABLED this rapist to continue raping children for many more years after Brady became aware of Smyths crimes. Brady should be arrested and charged and jailed when found guilty.
Or is there a new category of criminal, blue collar, white collar and now dog collar. It seems the last two categories are beyond the reach of the law in this state. Remember priests jailed previously in Ireland were defrocked beforehand. Heaven help us.
Late but welcomed input from Gilmore… I set up a facebook campaign 3 years ago, looking for Brady to resign, when his involvement in cover-ups broke in the media …. Call me cynical, but, now that this has been broadcast on BBC, and not RTE and TV3 (like it was 3 years ago), now, people think he should resign…. Why do we need to wait for a foreign TV station to broadcast to 100′s of millions what an absolute sham we have in this country, when we were told all these same facts 3 years ago… I can’t figure this part out… GRRRRRRRRRR
I think its because RTE and TV3 are not seen as very credible when it comes to documentary alot of the time when compared to say Channel 4 or BBC, they also air to a smaller audience then the likes of the BBC.
I know many people who just don’t watch RTE anymore and as such would not be aware of the shows they air.
Cal
I agree that it is a dis grace that an English tv channel has highlighted Brady’s involvement with Smiths cover up and his protection … I am getting more and more angry at all that is happening . Is he like so many people in ”powerful ministries” be it banking or politics or the church that he believes he is beyond retribution? e is so far removed from reality that he is not affected by the damage and reality of child rape in a victims life and the lives of family and friends . He must leave or be removed .
There are many people in Ireland unworthy of positions of authority, political opportunists and senior clerics alike.
Well, you have to start weeding them out sooner or later, or they’ll weed you out.
About time a leading politician made a clear unambiguous statement on this.
Three days ago, his backbencher TDs were on thejournal.ie arguing at length that we couldn’t just chuck the religious orders out of primary education, that we have to work with them to achieve some sort of consensus.
Now Gilmore’s saying that anyone who knew what Brady knew shouldn’t be in a position of authority.
Is it me, or do those two things seem to be mutually exclusive philosophies?
Those backbencher TD comments are here btw:
http://www.thejournal.ie/poll-indicates-three-quarters-of-parents-want-change-in-primary-school-patronage-434184-Apr2012/#comments
The sad thing is whomever would replace Brady would share the same mindset.The Vaticans defense of Brady shows nothing has changed.No one it seems to me in the church feels any wrong was done Brady therfore i feel in its present form it is doomed.
To have known and not reported this to the police and the result is this fowl human beast to continue raping innocent children is unforgivable. Brady is as guilty as if he raped these poor children himself, he should face criminal charges
Is Gilmore implying that Brady STILL has authority? Why isn’t Gilmore insisting on the complete dismantling of Brady’s architecture of child abuse concealment? In the new Ireland that Gilmore’s government is busy building, ordinary people, who have lost their jobs through no fault of their own, or who need help from the social welfare, are going to be harassed, bullied and intimidated yet those who are known to have facilitated the coverup of child abuse are just going to be subject to a bit of finger-wagging!
Not good enough Gilmore. It’s time we treated criminals for what they are and afford dignity to those who deserve it.
Martin McGuinness has also called on Cardinal Brady to “consider his position” because of wrongs committed in the 70s… Ehhh… Mr Pot, this is Mr Kettle…
Paul,
actually related to the subject….Remember Michael Woods and the “deal” with the Religious?
Pot, Kettle etc.
Paul, Gerry Adams advised his own Niece to go to the Police about the fact that his niece was being abused. I think your comment is a pretty desperate attempt to slag off SF on a topic like this. Pretty sad really. If i understand your position, you are implying Martin McGuinness shouldn’t have made any requests for Brady to stand down???
Child abuse is a very very serious matter. Dragging it into party political slagging matches is totally inappropriate.
Paul, i just read your twitter account header .. You are a proud FF member … If you consider slagging off Martin McGuinness for criticizing Brady on this issue as one of FF’s prouder moments, you are just demonstrating how little FF have learned in the last few years. I am sick to the pit of my stomach with you and your ilk. You know no bounds or depths to lower yourselves to.
Brady said he didn’t realise the damage that was caused to the children !!! He also maintains that he reported to his bishop who in his turn reported it to the norbertine order (Smith’s order) BUT Why wasa it not reported to the police .These were educated men ! Why did Sean Brady not walk into his local police / garda station and report it . He was a teacher , he was with kids , he should have known the damage smith caused.
Of course he should resign . Exercise some decorum and put his hands up and leave . He is after all only one man and should not be so proud to believe he is any thing more.
Resign? Decorum? I don’t want him to resign with decorum.
I want to see him arrested by the Gardai for failing to report a series of serious crimes against children and perverting the course of justice, and then I want to see him prosecuted for that in court by the DPP and then I want to see him in jail to send a message to the other priests and members of the RCC that Ireland is a hostile place to anyone who rapes a child.
Mark Dennehy
Apologies ! I do not mean he should resign with decorum . Obviously I have not made my self clear . He should resign if he had any dignity and leave. Failing that he should be removed. The problem here is that these guys think they are above all of us . I personally know what I would like to see happen …… However! I did not mean to give the impression that i have any sympathy for him . He is the one lacking dignity and he lacks humility.
Captain Blowhard,more hot air and no action,as usual.The Labour party way!!!
After using opinions to steal from Social Welfare Recipients for over a decade politicians display that no one could be trusted in positions of responsibility until all of the victims are found.
Eh?
All this new information about Cardinal Brady merely having the responsibility of “taking notes” during the 1975 investigation really annoys me.
The TRUTH of the matter, ironically, can be found in a Church statement from 2010 and reads as follows:
A statement from the Church in March 2010 said: “Cardinal Brady had been drafted in to CONDUCT THE INVESTIGATION because he held a doctorate in canon law”.
He says things that court popularity and he fooled a lot of people coming up to the last election.
His pronouncements on this issue have to be taken in that context.
For he knows words are cheap and easy.
What action is he prepared to demonstrate.
For action is warranted in this case.
I have no interest in what the tanaiste says.
Hah Gilmore out of his box again. And flogging a dead horse! Yet silence on the flogging of live horses…. the Irish people. Why don’t you resign Gilmore because as far as I can see you are far more dangerous than some old fop trying to hold onto his career……. oh wait……. And yes I am a disgruntled labour voter.
He should be defrocked,and expelled from ireland.He covered up for too long.
Auld Gil must have been reading the journal.ie poll…
This man Cared more fore his career than the care of children, just as guilty than Smyth.
Credit where it’s due, not often have we seen a politician come out and call it as it is. Thought I’d wait a lifetime to hear the likes of it.
What’s the difference between stating something and suggesting it ?
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