Impassioned plea from Les asking people to stay at home
FATHER OF BOYS WITH RARE DISEASE MAKES AN APPEAL
A RATHNEW father of two sons with a rare genetic illness is encouraging people to stay at home to save lives.
Les Martin’s sons Cathal (Cogs) and Ciaran (Kiwi) have both been diagnosed with Late Infantile Metachromatic Leukodystrophy (MLD).
On Saturday, Les shared a brief video online of himself and Cathal. He encouraged people to keep following the public health advice in order to help slow the spread of Covid-19 and protect vulnerable members of the community.
In December 2016, Cathal Martin was diagnosed with Late Infantile MLD at the age of two and a half. In February 2017, the family learn that Cathal’s younger brother Ciaran had the same condition.
In 2017, the Martin family travelled to Italy where Ciaran received potentially life-saving treatment. However, Cathal’s diagnosis came too late and his condition remains terminal.
During the short video, Mr Martin said the family spent 56 days in isolation and another three to four months social distancing in order to save Ciaran’s life. But, Cathal and many others remain vulnerable and are at risk from Covid-19.
‘I want to encourage everybody to keep up the good work and stay indoors and to follow the rules and advice by our leaders at this time. It’s to keep everybody safe. If you’re getting agitated about the house, I’d encourage people to take a look around them and realise that if they have food in their press, a roof over their head and a healthy family around them, that’s all anybody ever needs. Everything else is a bonus that some of us don’t enjoy,’ Les said.
The video has been viewed hundreds of thousands of times on social media platforms. It has also been circulated online by RTE.
Speaking to this paper, father-of-three Mr Martin said the video received a ‘massive response’.
‘We got hundreds of comments from people saying it gave them some perspective.’
Mr Martin added that many of those who got in contact said the video ‘ broke their hearts but people were also counting their blessings and wanted to get on with lockdown for other people.’
Cathal was given six to 12 months to live three and a half years ago but the youngster will celebrate his sixth birthday in May.
Now four years old, Ciaran is doing well and will start primary school in September.
‘I wanted to share a few words to remind people how lucky they are and how precious life is. People are doing really well. It’s a big ask but in the grand scheme of things, it’s quite small. Three years ago, we spent time in proper isolation so I know what its like but it’s worth it,’ Mr Martin said.
Les has been campaigning to expand screening of newborn babies and to support the rare disease community in Ireland by improving access to treatments and medical representation for people with rare diseases and their families.
In February, the Martin family joined President Michael D Higgins and his wife Sabina and other families from the rare disease community in Ireland for a special event in Aras an Uachtaran to mark Rare Disease Day.
Facebook pages called ‘Cogs and Kiwi’ and the ‘Martin Family Trust’ outline their campaigning work.