Heartbreaking | Parents Battle To Save Son From Genetic Disorder
A family from County Wicklow are facing heartbreak as they fight to save the life of their youngest son from a rare genetic disorder with no known cure, while they also try to come to terms with the unavoidable loss of their eldest son with the same condition.
It's the stuff of nightmares. Leslie and Lynda Martin, from Rathnew, say their son Cathal was born a perfectly healthy boy and seemed to be reaching all his milestones like any other little child. However, after noticing trouble with Cathal's walking, and after multiple trips to the doctor and Tallaght hospital, the family were told the devastating news in December 2016 that their two-year-old boy has metachromatic leukodystrophy (MLD). A condition which affects the nervous system. Sadly, the diagnosis came too late for Cathal and his condition is now terminal.
Because of his illness, Cathal cannot walk, he cannot feed himself, chew or swallow and is now 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.
Just as Leslie and Lynda were coming to terms with Cathal’s diagnosis, they received the devastating news that their youngest son, one-year-old Ciaran, also has the condition. However, as Ciaran's diagnosis has come at an earlier stage, the family have some hope; an Italian trial, which has shown to delay the onset of symptoms.
The couple say that their goal now is to save Ciaran's life while keeping Cathal as comfortable as possible for the rest of his little life.
On the 7th of March (Ciaran’s 1st birthday), the family flew him to Milan for testing. He went through numerous tests and is eligible for The Gene Therapy Clinical Trial. This has given the Martin family a glimmer of hope in this very dark time.
In just a few days (March 25th), Ciaran’s 6 month treatment will begin with an intense Gene Therapy programme, and a course of chemotherapy. The family face a really tough time, as they split themselves across the seas, to take care of their two boys, and 4-year-old daughter Holly. One parent will travel to Milan with Ciaran, while the other will stay in Ireland to look after Cathal’s complex medical needs.
Because of Cathal's diagnosis, Ciaran was tested and diagnosed early. While unfortunately, it is too late for Cathal, the family's hope now, is that his legacy will be saving his little brother's life.
If you would like to help the Martin family in their battle to save little Ciaran's life, please consider making a donation to help fund their expenses. The family are almost half way to their €250,000 target.