21 April 2011 No Comments by The Northern Standard

By Veronica Corr

Amelia Ryczan, a little Polish girl living in Foxfield, Carrickmacross, has just returned from a week of intensive tests for an experimental trreatment in the United States for Battens Disease. Battens Disease is a rare neuro-degenerative condition that affects babies, young children and juveniles.
The invasive procedures she underwent during her trip involved taking a sample of her spinal bone marrow, MRI scans and eye exams, which would be an ordeal for an adult, but brave little Amelia only turns four tomorrow, Friday, April 22nd.
Tamara, Amelia’s mother accompanied her on the trip to the New York Presbyterian Hospital: Weill Cornell Medical Center, while her father Damian and brother Adrian stayed at home.
The week away was very hard on Amelia, but doctors are hopeful that she will be able to start undergoing treatment in June. Her parents find out in three weeks if Amelia’s test results identify her as a suitable candidate for a procedure which will prolong her life.
The operation Amelia will undergo if approved for the treatment will involve six holes being bored into her skull to facilitate the injection of genes.
Her father Damian is very hopeful that a breakthrough is just around the corner for Battens sufferers, as he has great faith in the expertise of the doctors across the water.
Stating that it is important to stay positive, he added that if the treatment didn’t have at least a percentage success rate, then medical practitioners wouldn’t be doing it.
So while Amelia’s parents eagerly await the results of her tests, they ask people to pray for their daughter at this trying and difficult time. They say that without the assistance of Bee for Battens, the trip would not have been possible, as the charity funded flights and accommodation.
The couple also wish to acknowledge the emotional and financial support they have received from the public in Carrickmacross and County Monaghan at large. Donations made locally cintributed significantly to funding Amelia’s treatment.
Liam Heffernan from County Kerry, whose parents founded the Bee for Battens charity, is also hoping to undergo the same treatment as Amelia in May.
If you want to learn more about Battens Disease or wish to make a donation, you can do so by logging onto

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