AN IRISH family are desperately trying to raise €1million for a life-saving operation for their young son, who suffers from a rare disorder and has only months to live.
Four-year-old Cian McDonnell-Lynch from Carlanstown in Co. Meath went blind in 2011 when he was just a year old.
He was later diagnosed with Revesz Syndrome - a severe form of bone marrow disease that affects one child in a million.
He is believed to be the only child in Ireland suffering from the condition.
Then, in January, Cian was dealt another blow when he was diagnosed with a malformation in his lungs, which mean he is unlikely to live past Christmas unless he gets a double lung transplant.
His parents, Lisa and Dónal, are now seeking urgent treatment in the US after doctors at London's Great Ormond Street Hospital said he was not suitable for a double lung transplant in Britain.
Last week the McDonnell-Lynch family flew to US, where doctors will determine if he can receive the transplant.
Yesterday experts at Boston Children’s Hospital began a five-day assessment of his condition.
“This is a do or die situation. If this operation is not carried out, he is unlikely to live beyond Christmas,” said Mandy Shipp from the fundraising committee Hope for Cian.
The cost of Cian’s treatment is likely to be just under €1m but the after-care treatment could be double that fee.
Generous donors have raised €240,000 so far.
“Basically Boston is Cian’s last hope of survival and the fees are astronomical by Irish standards,” Ms Shipp added.
“We need the best part of €1,000,000 in order for him to be on the list for a lung donation.”
Crumlin Children’s Hospital in Dublin had referred Cian’s case to Great Ormond Street Hospital in London, which specialises in transplants for children.
But after being deemed unsuitable for treatment, his family looked to the US for help.
After Cian was diagnosed with his bone marrow condition in 2011, he had a successful bone marrow transplant operation in Dublin two years later.
But his health worsened earlier this year when he began to struggle with his breathing.
He was diagnosed with abnormalities in the lungs, or a condition known as microscopic pulmonary arteriovenous malformation, which means there are tiny pinholes in his lungs.
He now requires a double lung transplant.
You can donate to Cian's treatment here.
