Crucial Batten trial cancelled amid haemorrhage fear

Parents of a girl battling a terminal neurological illness are devastated after a potentially lifesaving medical trial was cancelled at the last minute.

Amelia Ryczan, 4, from Carrickmacross, Co Monaghan, and her mother, Tamara, had travelled to the United States last week for the pioneering surgery.

Amelia suffers from late infantile Batten disease, a rare neuro-degenerative condition, and the radical medical treatment could lengthen her life. She may not have another chance to take part in the trial.

The eight-hour operation was cancelled minutes before it was due to take place last Tuesday when blood tests conducted by the US hospital suggested the risk of a brain haemorrhage was too great. This was not indicated in an earlier blood test analysed in an Irish hospital.

The Weill Cornell hospital in New York had offered to operate on Amelia two weeks ago when it received positive blood test results from the hospital in Ireland.

However, repeat blood tests conducted at the US hospital suggested the haemorrhaging risk was too high for the surgery to go ahead.

Amelia’s father, Damian, who stayed at home to mind an older brother, Adrian, 6, when she was in the US, said another blood test would be conducted today to see if there had been any further change.

Damian said he cried when his wife told him the operation had been cancelled: “Just two years ago Amelia was a perfectly healthy child. Now she can’t walk or talk and does not understand anything.”

Amelia’s condition is known to affect fewer than a dozen children on both sides of the border and, had the surgery gone ahead, she would have been only the second Irish child to take part in the trial.

The Bee for Battens charity had raised funds to allow Amelia, her mother, and a family friend to travel to America and is preparing to raise more funds for a second trip if the family is offered the treatment again.

Organisation spokes- man Tony Heffernan said his daughter Saoirse, who died last year, was the first child to be screened for the medical trial. She died before treatment began.

Mr Heffernan’s three- year-old, son, Liam, underwent the treatment last May. “He is doing well. He is nine months off the anti-seizure medicine. That is a milestone we celebrated two days ago with a bottle of Lucozade.”

* beeforbattens.org