A second Irish family has received the horrific news that their child is suffering from the fatal brain disease, Battens disease.
Last month, three-year-old Amelia Ryczan, from Carrickmacross, County Monaghan was diagnosed with this aggressive disease. Her family is now applying for treatment with help from the charity Bee for Battens.
This charity was established just months ago by the Heffernan family whose two children Saoirse (5) and Liam (3) are suffering from this terrible disease. They are the only three diagnosed cases in Ireland.
Initially Battens disease can be spotted though the onset of vision problems, seizures, personality or behavior changes, slow learning or regression. Eventually children with Battens disease become blind, bedridden and demented. Most children with Batten's disease are not expected to live past 12-years.
Tony and Mary Heffernan are supporting Damian and Tamara Ryczan, originally from Poland, as they apply for medical trials in Weill Cornell Hospital, New York which could save their daughter's life.
Saoirse Heffernan (5) has already attended the New York hospital for a series of tests. As the Heffernan children's conditions continue to deteriorate the Heffernan family feels that time is running out.
Thankfully the Ryczan family received good news that Amelie's brother, Adrian is free from the disease.
The Heffernan family are heartened at how their charity is growing and the fact that they can now support another family in need.
Tony said "The charity is growing. They [the Ryczan family] found out in the last half of July and they've been in contact quite a bit with the charity. We've a number of volunteers and we've offered them support and advice."
"We will do exactly what we were set up to do, we will provide support for all sufferers of this disease on this little island of ours, and where we can we will promote awareness and fund participation of our affected children in medical trials."
"At the moment we're clock watching for America. We just want to find out the news and we want to find out when Saoirse is going," he said.