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Our story

Our names are Leslie and Lynda Martin and we live in Wicklow. 

We have three children, a daughter aged 6 Cathal aged 5 and Ciaran aged 3. Our lives have recently been turn up-side-down by the devastating news that both of our sons Ciaran and Cathal, have late-infantile Metachromatic Leukodystrophy (MLD)- a rare, terminal genetic illness.

Our son Cathal was born a perfectly healthy boy in May 2014 and was reaching all his milestones like any other little child.   We first noticed a problem when Cathal was having problems walking.  After multiple trips to the doctor and Tallaght hospital Cathal was diagnosed with MLD in December 2016. He is now 5 years old. As a result of this illness, Cathal today is fully paralyzed, peg fed, and extremely weak. He Is now in the very late stage of this brutal disease and he does not have much time left.

As we were slowly coming to terms with Cathal's diagnosis we were advised to get Ciaran, Cathal's baby brother, tested for the same condition, doctors told us the heart-breaking news that Ciaran too has MLD.

Unlike Cathal, Ciaran had not yet displayed any symptoms of the condition and could take part in a clinical trial in Milan. On 7th March 2016 (Ciaran's 1st birthday), we flew with him to Milan. Ciaran underwent a Gene Therapy Clinical Trial there for 6 months and returns regularly for ongoing treatment and check ups.This has given us a ray of hope in what has been a very dark time for our family.

As Cathal is already displaying significant symptoms of MLD he was not eligible for the Trial.

Now 2 years on from diaganosis Ciarán is doing well. His therapy was somewhat successful and we hope his disease has stopped getting any worse. He is disabled tho and requires full time care. Cathal however is very unwell at the moment.

Cathal's diagnosis aged 2 1/2 allowed for Ciaran's early diagnosis at 11 1/2 months. and his legacy may be that he saves his baby brothers life.

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

We need your help to raise funds so that we can provide Ciaran with the support and care he requires whilst undergoing this intense treatment programme. There are significant costs and challenges involved with caring for two very sick children in two different countries and all support will be gratefully appreciated. 

Thank you

Leslie and Lynda

What is MLD

Late Infantile MLD is characterized by normal development during the first six to 18 months followed by a progressive regression that shows first in motor skills, perhaps never learning to walk, or showing a deterioration of balance. The regression will rapidly affect speech, overall mobility, and basic cognitive skills. Often the muscles will painfully cramp up (rigidity), and feeding requires a tube directly into the digestive system.  Children diagnosed with late infantile MLD typically live 5 to 10 years after diagnosis.

Your money will enable us to provide Ciaran and Cathal with the support and care they require.
http://www.mldfoundation.org/research-gene-therapy.html

Contact Details

Rathnew and Wicklow area , Wicklow Town, Wicklow, IRELAND

Cause Registration

Revenue (Charities Unit) (CHY): Trust