THE FAMILY OF a young Irish boy with a rare genetic condition are rushing to raise thousands of euro for a life-saving lung transplant.
Cian McDonnell Lynch, a four-year-old boy from Co Meath, has Dyskeratosis Congenita. The disorder is characterised by changes to skin pigmentation and progressive bone marrow failure.
Cian was born two months premature. Shortly before his first birthday, he was diagnosed as being completely blind.
His mother, Lisa, told TheJournal.ie that while she knew something was wrong, the full diagnosis was a huge shock.
Subsequent operations failed to restore Cian’s eyesight.
Cian then developed further issues, eventually leading to his diagnosis with the extremely rare condition, and in 2013 he received a successful bono marrow transplant.
“He was doing good after that,” Lisa said, “but recently I became concerned about after he lost a serious amount of weight.”
He has now been diagnosed with Microscopic Pulmonary AVM, and just weeks ago his parents received some devastating news:
“The doctor brought myself and Donal into a room, and told us he was being given months left to live.”
His file has been sent to Great Ormond Street Hospital [in London], but our last hope is a transplant in Boston.
Lisa said they met with doctors in Boston with knowledge of Dyskeratosis Congenita, and will be able to organise a lung transplant for Cian.
However, this will be a cost of an estimated €500,000.
The family are due to find out this week whether Cian has been successful in his application to Great Ormond Street.
Social media campaigns have been set up to help Cian’s family raise the money, with events cropping up in several countries. 4FM DJs Damien Farrelly and PJ Gallagher on Saturday helped launch Cian’s own version of the Ice Bucket Challenege – filming yourself cracking an egg on your head.
More details on how to donate money towards Cian’s surgery are available on the Hope For Cian Facebook page. You can also Text CIAN to 57802 T&Cs apply. €2.00 per text. A minimum of €1.61 goes to “The Hope for Cian Trust”.
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