PRIDE… Caroline and her son Lee
WHEN her son was thirteen months old, Caroline Martin was told that he would not survive three months more.
And that theme of ‘not surviving’ has plagued Lee Martin’s life.
But, now at the age of 29, Lee, who has an extremely rare chromosome disorder, is living independently in Ballinamallard in what his mother describes as a ‘miracle’.
He was diagnosed as a child with triploid diploid mossiaca, a rare chromosome disorder that is thought to affect just over 50 in the world.
“I was only ever told that there was one child in Ireland, and he was the first registered in the UK with the syndrome,” explained Caroline this week.
“Lee is a 6ft 2 stature, but he is squashed into a 4ft 7 frame – so all his organs are compressed in there, which is why he is top heavy. He is also chronic asthmatic.”
Symptoms of Lee’s condition can vary from person to person. He receives full-time care at his home in Ballinamallard. But his mother, originally from Lisnaskea, spoke of a ‘culture of negativity’ surrounding Lee, in that throughout his life she has been told he would not survive.
“I never visualised him getting to this age to tell you the truth, it’s that much of a miracle. The doctor told me at five that he’ll not get past five, then he got to 10 – and the doctor said ‘be prepared’.
“Every time I went to Belfast this would happen. I lived all my life as if I was standing on the edge of a cliff, just waiting for the push to go.”
But, each time, be it operations, bouts of illness, Lee has made it through: “It’s just such a relief that you’ve got another chance. He’s gone past the nine lives, I’m beginning to say he has 99 lives.”
When he was 22, Lee was set up in a two bedroom bungalow, and has nine carers through direct payments with the Western Trust.
“Lee can go on on a daily basis, but is yet so fragile and could just go down at any second. He didn’t want it at the time, he actually thought I was kicking him out – I said no, I’m empowering you to be independent. The change in him was magic, as a 22-year-old, getting his own bachelor pad.”
Caroline recalls standing in tears at that moment, giving Lee as close to a normal, independent life that she could.
“It was awesome – that even though he has all this opposition against him, to be able to live a normality of life in his own two bedroom bungalow with tea towels, cups – anything he fancies.”
Lee has two siblings, a sister, Zara, a brother Dwayne. His father is Keith. Lee himself enjoys computers; he attends boccia on a Wednesday at the Lakeland Forum – and is a big fan of radio personality Hugo Duncan.
Over the past few weeks, Caroline discovered a Facebook page containing a number of the 65 people thought to have triploid diploid mossiaca in the world, and the group plans to meet next year.
“If I can pull this off – I know there’ll be a lot of issues – but it’s not impossible. He is the second eldest in the world, the second living one. So it’s unreal to think that he is one of the 65, the world has become a very small place all of a sudden.
The group speak to each other about what they go through on a daily basis, and shows that despite the conditions’ rarity it isn’t unilateral.
“The plan of attack is this time next year to fly the 65.
“If we can, to put them all together to show that we’re not alone.”
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