President Higgins welcomes Martin family to the Aras
A Wicklow TD has heaped praise on a Rathnew family after President Michael D Higgins celebrated Rare Disease Day in Aras an Uachtarain last week.
Deputy John Brady said he was ‘honoured’ to join families who are dealing with numerous rare diseases at the event hosted by President Higgins and his wife Sabina.
‘The reason the event, which was held on Saturday, February 29, was held in Aras an Uachtarain is down to hard work of Wicklow man Les Martin and his campaign to expand the Newborn Screening Programme,’ said Deputy Brady. ‘In his travels, he met with President Higgins and convinced him of the merits of hosting a party at his home to celebrate the diverse rare disease community of Ireland on Rare Disease Day.
‘There are actually between 6,000 and 8,000 rare diseases and while a disease may be rare, rare diseases are most certainly not. Indeed, in Ireland, it is estimated that there are 300,000 people living with a rare disease.
‘I want to thank Cogs and Kiwi, Les and Lynda Martin for the invite and allowing me to be part of the day and meeting so many families from the rare disease community,’ said Deputy Brady.
Les and Lynda Martin discovered in December 2016 that their son Cathal (affectionately known as Cogs) had a condition known as Metachromatic Leukodystrophy (MLD). Just three months later, their other son Ciaran (known as Kiwi) was diagnosed with the same condition.
A widespread fundraising campaign helped Ciaran to receive life-saving treatment on a trial in Italy in 2017. However, Cathal’s diagnosis came too later for him to receive treatment and his condition remains terminal.
Early last year, Mr Martin launched a campaign for an enhanched screening of newborn babies in Ireland, which would test for far more than the current eight diseases. Mr Martin wants the Irish health system to introduce a screening programme similar to the one operating in Italy, which now screens for 40 diseases.
While his campaign has received widespread support, Deputy Brady said that much more still needs to be done.
‘There’s a lot of work to be done to ensure Ireland stops failing so many citizens. A starting point needs to be implementing the National Rare Disease Plan,’ he said.
‘I will continue to work with Les and others for the expansion of the new born screening programme to test for a wider range of rare diseases and conditions and introducing legislation to ensure EU standards for new born screening are exceeded.’