THE FAMILY OF a young boy with a rare condition is hoping to raise €1 million for a potentially lifesaving lung transplant.
Cian McDonnell Lynch (4) from Carlanstown, Kells in Co Meath has travelled to Boston with his parents for an assessment to determine if he can receive a double lung transplant.
The family said the potential cost of the operation is expected to be just under €1 million, but the after-care treatment could be much more.
Cian suffers from Revesz Syndrome, a severe form of Dyskeratosis Congenita, which effects one child in a million. The condition is the failure of bone marrow to produce normal blood cells.
The four-year-old is believed to be the only child in Ireland suffering from the disease.
Mandy Shipp of the local fundraising committee in Carlanstown said: “This is a do or die situation.”
In March 2011, Cian (then just one-year-old) was declared totally blind and shortly afterwards was diagnosed as having deteriorating bone marrow.
In 2013, he underwent a successful bone marrow transplant operation in Crumlin Children’s Hospital in Dublin.
His story featured on TheJournal.ie back in June.
“We were really optimistic following that operation that his condition was not going to weaken any further. He went to playschool after that and we thought the worst was behind him,” Mandy said.
However, earlier this year he began to struggle with his breathing.
In January 2015, Cian spent five weeks in hospital where he was eventually diagnosed with microscopic pulmonary arteriovenous malformation – tiny pinholes in his lungs.
Crumlin referred Cian’s case to Great Ormond St Hospital in London where they specialise in transplants for children. Doctors there deemed him as being an unsuitable candidate for a transplant.
However, medics at Boston Children’s Hospital in Massachusetts recently indicated they might be in a position to perform the transplant.
“Basically Boston is Cian’s last hope of survival and the fees are astronomical by Irish standards,” Mandy said.
A fundraising page had raised close to €85,000 to date. More information is available here.
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