Please help us give our little boy the gift of life
A FAMILY who are trying to raise €250,000 to help two of their children who have a rare genetic disorder say they are living ‘every parent’s nightmare’
Leslie and Lynda Martin were told by doctors last December their two-year-old son Cathal had metachromatic leukodystrophy (MLD), which affects the nervous system.
Unfortunately Cathal was diagnosed too late. His condition is now terminal.
Then, last month their one-yearold son Ciaran was diagnosed with the condition. As his condition is at an earlier stage, Ciaran does have the possibility of taking part in a gene therapy clinical trial being run in Italy, which has shown to delay the onset of symptoms.
The boys’ mother Mrs Martin told the Irish Daily Mail: ‘It’s every parent’s nightmare.’
She said: ‘MLD takes all their skills away. So Cathal is completely immobile now. He just has very little movement. He’s under the palliative care team up in Laura Lynn. But unfortunately because MLD is so hard to diagnose and consultants aren’t really aware of this condition, Cathal is too far gone to be able to get any treatment. We want to make parents aware of what MLD is.’
Cathal was born healthy in May 2014. However when he got to around 18 months, his parents saw he had problems walking.
Mrs Martin, from Rathnew, Co. Wicklow said: ‘Cathal was pulling himself up and he was cruising with his walker, but was a little bit unsteady on his feet.
‘We thought any day now he’ll be able to get up and walk himself but he never did.’
Her husband said: ‘We went to the doctor and they started investigating what was wrong with him. As soon as we discovered what it was we had Ciaran checked as well. He came back as having it as well.
‘The thing about Ciaran is that we might be able to do something for him because he’s at a very early stage. We’ve been absolutely destroyed by it but we were given a chance at saving Ciaran. Now we have something to look to.’
As a result of his illness, Cathal, who will be three this May, has gone from a fully healthy 18month-old child to almost completely paralysed within a year and a half. As Cathal’s muscles are so weak, he cannot feed himself, chew or swallow and since last week he is being fed through a nasogastric tube. He also has to sit in a fully supported chair provided by Enable Ireland.
If his brother Ciaran does not undergo the treatment, it is unlikely he will survive. The treatment is understood to have had a positive outcome on six of nine similarly aged children. The treatment in Milan will take six months and require around-the-clock nursing care. It includes a process of bone marrow transplants, genetic engineering, and a recovery phase in full isolation.
Mr Martin said: ‘We have three kids in the house. We have another daughter Holly, who’s four and a half. We still have to change nappies, make bottles, try to enjoy the day with the kids with all of this in the back of our own minds.’
Donations can be made at www. idonate.ie by searching for The Martin Family in the Find A Charity search field.
‘We have been destroyed by this’