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'Amelia could walk a month ago. Our daughter is dying a little bit each day'

THE family of a three year-old girl who is the fourth child in Ireland to be hit with killer Battens disease are now fighting against the clock to save her.

Amelia Ryczan from Carrickmacross, Co Monaghan, was diagnosed with the aggressive neurological disorder on July 16, and she is already losing her ability to see, walk and talk.

Damian Ryczan and Tamara Rak, Amelia's parents who are originally from Poland, have been told by doctors that Amelia will probably be brain dead in less than two years.

Now they are linking up with the Bee for Battens charity to get placed on groundbreaking medical trials in Weill Cornell Hospital, New York -- Amelia's only chance of survival.



Shock

Damian told the Herald: "It was an awful shock. We didn't believe the doctors when they said there's no cure. It's very hard if someone tells you that your child is going to die and that's it.

"Every day she is dying a little bit. She could walk four weeks ago but now I have to hold her hands. If she was watching TV from far away, now she has to move closer to half way. And she can only talk a couple of words."

Amelia is now the fourth child living here with Battens, along with siblings Liam (3) and Saoirse (5) Heffernan from Kerry, and Rhiannon Bates (10) from Derry.

Battens is an inherited disorder of the nervous system that usually manifests itself in childhood and, over time, children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills before they become totally disabled and eventually die.

"We spoke to the doctors and they said it'll be maybe 16 months before her brain is completely damaged," said Damian. "There's not much time for the kids. The treatment in American is very, very dear and not so simple. You have a perfect kid walking, talking, and everything at the age of three, and then they're acting like a two-year-old and going backwards."

The couple are now forced to watch Amelia deteriorate, while they fundraise for research to help others. Damian said: "I know she's going to lose her vision in a short time, and that will be outrageous if she can't see. You can't imagine what's going to happen if she wakes up and is going to be blind. Those days are coming."

"A young child of three years old hasn't experienced anything and has to go away. Your kids are supposed to bury you, not the other way around. The tough days are coming so I have to be strong and support my wife."

The loving father is travelling to Kerry this Saturday to climb Carrauntoohill for the highest boxing match ever in Ireland, in aid of the Bee for Battens charity.

Donations can be made to Allied Irish Bank, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24, or go to www.beeforbattens.org

hnews@herald.ie