Sunday 30 April 2017

US surgery to give little Amelia chance of beating rare disease

Majella O'Sullivan

Majella O'Sullivan

HER parents were told she would probably not survive to see age five but now a little girl has at least a fighting chance of survival.

Amelia Ryczen (5), from Carrickmacross, Co Monaghan, is flying to New York on Monday where she will undergo potentially life-saving treatment for Batten's Disease -- an extremely rare, degenerative and fatal neurological disorder.

At least six Irish children were diagnosed with this inherited disorder in the past three years.

Amelia's Polish-born parents, Damian and Tamara, learned of her illness two years ago.

"They told us she would lose her ability to walk, then her eyesight and eventually she would die." Mr Ryczen told the Irish Independent.

The first ray of hope was when a Dundalk hospital nurse told them about the Heffernan family in Keel, Co Kerry, and the charity they set up, Bee for Battens.

"I sent a message by email and within 15 minutes Tony Heffernan rang me back and told me we were not alone. That was such a big help,'' said Mr Ryczen.

Tony and his wife Mary saw both their children diagnosed with the disease -- daughter Saoirse (5) died in January. Last May their son Liam (3) became the youngest child ever to undergo the treatment at the Weill Cornell Medical Centre, and his parents have seen notable improvements in his speech and mobility.

Amelia has already lost her ability to walk and talk, her eyesight is failing and she can often experience up to 200 seizures a day.

Bee for Battens is meeting the treatment bill -- she undergoes surgery on February 28 -- and helping her parents with travel expenses. The charity does not receive state funding and is dependant on donations, which can be made at www.BeeforBattens.org.

Irish Independent

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