Boy (4) who sparked ‘Hope for Cian’ campaign dies

A four-year-old boy whose only hope of surviving a rare disease was a double lung transplant, has died.

The family of Cian McDonnell Lynch from Co Meath confirmed on Monday night that their beloved son and brother "is with the angels now."

He had been in intensive care for 24 hours prior to that and he was a patient in Our Lady's Children's Hospital in Crumlin, Dublin since last week.

The Hope for Cian campaign has raised nearly half of the €880,000 needed to pay for what they hoped would be a life-saving double lung transplant in Boston Children's Hospital.

He was admitted to Crumlin hospital last week to have a liver biopsy and PEG feeding tube inserted and was recovering well from that when over the weekend he took a turn for the worse.

His parents Lisa McDonnell (33) and Donal Lynch (36) and sister Chloe (14) posted on the Hope for Cian Facebook page “Our beautiful boy is with the angels now. He fought so hard. Heaven is so lucky to have him. We are broken hearted. His Mammy, Daddy and big sister Chloe held his hand until the end. Fly high our beautiful boy where there will be no more suffering or pain.”

Within an hour it had been liked by more than 14,000 people and shared more than 4,000 times.

Speaking hours before Cian went into hospital, Lisa said the family, from Carlanstown, have been “amazed by the support we have received so far in our efforts to raise the equivalent of $1 million for his operation.”

Cian suffered from a very severe form of Dyskeratosis Congenita which affects one in a million. It led to his bone marrow failing and he had to have a bone marrow transplant in March 2013.

He was then diagnosed with microscopic pulmonary arteriovenous which are tiny abnormal blood vessels and the oxygenated blood is not reaching everywhere it should. The disease also led to him losing his sight.

In May, doctors told his parents that Cian had just months to live.