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Second family in race against time to save daughter from rare disease

A SECOND Irish family has received heartbreaking news that their daughter is suffering from life threatening Battens disease -- and they've joined the Heffernan family in a fight against the clock.

Amelia Ryczan (3) from Carrickmacross, Co Monaghan, was diagnosed with the aggressive neurological disorder last month -- and her parents are applying for treatment with help from the Bee for Battens charity.

Damian and Tamara, who are originally from Poland, are devastated that their daughter has been diagnosed with the fatal neurological condition, and Tony and Mary Heffernan are supporting the Ryczans in an application for the trials which could give little Amelia a chance of life.

The Heffernans' two children, Saoirse (5) and two-year-old Liam, suffer from the disease, and Saoirse has attended Weill Cornell Hospital, New York, for assessment for groundbreaking medical trials.

"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," Mr Heffernan said.

"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."

Unlike the Heffernans, Amelia's parents were given heartening news after her diagnosis, that her brother Adrian is free from the illness.

While Saoirse is now blind and she can hardly walk and talk now due to her illness, Tony says she's still a bright and positive five year-old.

"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 added.

Tony and Mary are currently caring for Saoirse 24/7, while Tony campaigns tirelessly to raise awareness and funds for Battens disease.

"Liam is good. He was in Temple Street last week, and they did an assessment of his seizure activity, and they don't need to put him on medication yet. He's still having spells but the epileptic value is not sufficient enough to warrant medication."

The charity aims to save the first child from Battens Disease. Donations can be made to Allied Irish Bank, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24.

hnews@herald.ie


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