We have three children, a daughter aged 4, Cathal aged 2 and Ciaran aged 1. 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, genetic illness with no known cure. Our son Cathal was born a perfectly healthy boy in May 2014 and was reaching all his milestones like any other l
ittle 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 last year. As a result of this illness, Cathal today cannot walk, or even move very much. He sits in a customized fully supported chair provided by Enable Ireland. Cathal’s muscles are so weak that he cannot feed himself, chew or swallow and from a week ago he is fed through a nasogastric (NG) tube. The rate of deterioration for Cathal has been terrifyingly fast and he may lose what little is left of his ability to speak very soon. 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. On 28 February doctors told us the heart-breaking news that Ciaran too has MLD. Unlike Cathal, Ciaran has not yet displayed any symptoms of the condition. Tallaght Hospital arranged for Ciaran to be tested for eligibility to take part in a clinical trial in Milan. On 7th March (Ciaran’s 1st birthday), we flew with him to Milan. Ciaran underwent a battery of tests and is eligible for The Gene Therapy Clinical Trial. 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 is not eligible for the Trial. Next steps
Ciaran will begin a six-month treatment programme on 25th March. Treatment begins with an intense Gene Therapy programme, and a course of chemotherapy and he will require 24 hour family support and care. Our plan is that one parent will travel to Milan with Ciaran on the 25th March as he begins treatment. The other will stay at home to look after Cathal’s complex medical needs and also to look after our 4 year old daughter. 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 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
