Sure, we all have a hard life, battling late trains, dropped ice cream and holes in our shoes on a drizzly day.
Oh, the hardship, the misery, the curse of it all, it’s enough to make you believe there is no Elvis.
And then reality gives you a good slap across the back of the head when you’re presented with a happy young family whose world is thrown upside down when their two sons are diagnosed with the same rare, genetic illness that has no cure.
That’s what has happened to Wicklow parents Leslie and Lynda Martin, discovering a year ago that their eldest, 3-year-old Cathal, had late-infantile Metachromatic Leukodystrophy (MLD). Today, Cathal cannot walk, or even move very much, and spends most of his time in a customised, fully-supported chair, provided to the family by Enable Ireland.
It was on February 28th that, no advice from their doctor, that Leslie and Lynda had their younger son, Ciaran, tested, and they were given the heart-breaking news that he too has MLD.
There is hope though, in the shape of a clinical trial in Milan, Ciaran being flown out on his 1st birthday – March 7th – for a battery of tests. He is now eligible for The Gene Therapy Clinical Trial, which starts with a six-month treatment programme on March 25th.
And that’s when one parent will travel with Ciaran to Milan whilst the other stays at home, to look after Cathal, and their 4-year-old daughter too. They just need €250,000 to do all this.
You can find out more about the Martin family’s determination to give their sons – nicknamed Cogs and Kiwi – a good life right here, where, more importantly, you can also donate to their long journey ahead.
We’ll keep you posted on their progress over the coming months. In the meantime, if you need to know more about The Gene Therapy Clinical Trial, you can do sohere. You can also find out more about Cogs & Kiwi, and the Martin Family Trust, on their Facebook pagehere.
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