Saturday 24 August 2019

Parents of two boys with devastating condition offered 'ray of hope' to save one of their lives

Leslie and Lynda Martin with sons Ciaran and Cathal, who have metachromatic leukodystrophy
Leslie and Lynda Martin with sons Ciaran and Cathal, who have metachromatic leukodystrophy
Jane Last

Jane Last

The parents of two little boys diagnosed with a rare genetic disorder have appealed for help in raising €250,000.

Leslie and Lynda Martin, from Rathnew, Co Wicklow, were told by doctors in December that Cathal, who is nearly three, has metachromatic leukodystrophy (MLD).

The condition, which affects the nervous system, is terminal for Cathal.

Then they learned last month that one-year-old Ciaran also has the condition.

However, as Ciaran was diagnosed at an earlier stage, he can take part in a trial in Italy which has been shown to delay the onset of further symptoms.

The treatment has had a positive outcome for six of the nine children who have taken part in past trials.

While partially funded, the treatment will take six months and require round-the-clock nursing care.

The family are planning to do two 12-hour shifts each day, seven days a week, and rotate between Ireland and Italy.

During this time, they will also be caring for Cathal.

"Our son Cathal was born perfectly healthy in May 2014 and was reaching all his milestones," said Leslie.

"We first noticed a problem when he was having difficulty walking.

"After multiple trips to the doctor and Tallaght Hospital, Cathal was diagnosed with MLD in December last year.

"He has gone from a fully healthy 18-month-old child to almost completely paralysed within a year-and-a-half.

"Cathal's muscles are so weak that he can't feed himself, chew or swallow and he is fed through a nasogastric tube.

"The rate of deterioration has been terrifyingly fast. He will lose what little is left of his ability to move and speak very soon.

"Unlike Cathal, Ciaran has not yet displayed any symptoms of the condition. Tallaght Hospital arranged for him to be tested for eligibility to take part in a clinical trial in Milan.

"Ciaran had a battery of tests and is eligible for the Gene Therapy Clinical Trial. This has given us a ray of hope. As Cathal is displaying significant symptoms, he is not eligible."

"Our goal is to save Ciaran's life whilst keeping Cathal as comfortable as possible for the rest of his tragically short life."

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