Rare disease centre could be lifeline for very ill children
The father of two children diagnosed with a rare and fatal condition has urged the public to support the development of Ireland’s first dedicated rare disease centre for families.
Tony Heffernan and his wife Mary know only too well the personal impact that rare disease can have on a family, having already lost their daughter Saoirse (5) to Batten Disease in 2011.
Now they face the unenviable position of facing a similar fate for their four-year-old son Liam, who has the same condition.
Recently the family returned from the United States, where Liam completed his 12-month check up following brain surgery in May 2011 at the Weill Cornell Medical College in New York, and received the heartbreaking news that the treatment trial will not cure their son’s condition.
Despite this, they acknowledged that the pioneering medical treatment trial was a positive step in the right direction towards a cure, effectively ‘pausing’ the disease and allowing Liam to have an extended life.
Tony Heffernan met with Health Minister James Reilly at Farmleigh last month at the opening of the consultation process on the rare disease centre. He said a huge sector of Irish society has been “affected by rare disease, which the Department of Health acknowledges will impact between 6 and 8 per cent of the population during their lifetime.”
The Heffernans, who founded The Saoirse Foundation charity in March 2010, are now increasing their scope to help improve the lives of very ill children in Ireland, with the proposed rare disease centre – to be named Liam’s Lodge after their son – forming the centrepiece.
The charity will be hosting a number of upcoming fundraising events for the centre, including a 5k fun run at Dublin Airport on 26 August in partnership with Barretstown.
For more details visit BeeForBattens.org
