Family fighting for their sons’ lives thank the public for their assistance
Leslie and Linda Martin have thanked the public for their fundraising efforts following an appeal to help save their sons’ lives.
The parents have three children, a girl and two boys, but just last year received the news their sons had a rare medical condition.
Both of the boys, Cathal and Ciaran, have late-infantile Metachromatic Leukodystrophy (MLD), a rare genetic illness that has no known cure.
Late infantile MLD occurs during the first six to 18-months of a child’s life, whereby a progressive deterioration takes place, first in motor skills where a child may never learn to walk, or they simply may begin to show a weakening of balance.
In turn this will begin to rapidly affect speech, overall mobility and basic cognitive skills.
And unfortunately, children diagnosed with late infantile MLD typically only live five to 10 years after diagnosis.
Speaking about their eldest son’s condition the Martins shared: “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 he is now fed through a nasogastric 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.”
Following the three-year-olds diagnosis, they had Ciaran tested for the same illness, where the family endured more heartache.
Although he has been diagnosed, Ciaran has not displayed any real signs of deterioration yet, therefore medical staff arranged for him to be tested for eligibility to take part in a clinical trial in Milan.
On his first birthday the family flew to Milan where Ciaran underwent several tests and was deemed eligible for ‘The Gene Therapy Clinical Trial’.
During a difficult time, the news was a ray of hope for Ciaran. The family’s goal is to save Ciaran’s life while they try to keep Cathal as comfortable as possible for the rest of his short life.
But the medical journey they have embarked upon comes at a costly price, with the family having to split themselves between two countries.
With many special events over the past year, the Martins have come out to thank the public for their incredible assistance in helping to raise much needed funds for the boys, and gave an update on the boys’ condition.
“As a family we want to send huge thank you to everyone who has dug so deep to help us out in our time of need. We have now gathered our fund target and hope that it will be enough to carry us through the rest of this ordeal.”
“Ciaran has finished the main part of his treatment and it now remains to be seen just how well it will turn out for him.”
“Unfortunately Cathal has not been so lucky and continues to get weaker. We are bringing him home for a while to have a peg feed installed in his stomach to hopefully make it easier and more comfortable to feed and medicate him.”
The family have a long road in front of them and we at MagicMum wish them all the best.
We’re so glad that their target was achieved, but nonetheless if you would like to donate to the Martin’s cause you can do so here, or visit their Facebook page for event updates.