Cian passes away

Little Cian McDonnell Lynch passed away this evening. Fundraising had been going on across the county in an effort to raise funds to bring the four year old from Carlanstown to Boston for a double lung transplant.

Last week he underwent a liver biopsy and PEG insertion in Crumlin Children’s Hospital, and was being treated in the high dependency unit there, but took a turn on Sunday morning and passed away this evening.

On the Hope for Cian Facebook page this evening, his parents Lisa McDonnell and Donal Lynch wrote: '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.'

Cian was suffering from a very severe form of Dyskeratosis Congenita which affects one in a million. He went completely blind in March 2011 at the age of one after an operation to try to save his sight was not successful. Shortly after this he got very sick and doctors soon discovered that his bone marrow was failing.

It took a long time to get a diagnosis for Cian as his condition is so rare. He was constantly in and out of hospital getting platelet and blood transfusions for a year until his blood count hit rock bottom. In March 2013, Cian had a successful bone marrow transplant. In January this year Cian went to hospital as he was low in energy and low oxygen saturation counts. He spent five weeks in hospital until he was diagnosed with microscopic pulmonary avms. Doctors were not sure if this new problem was caused as a side effect of his bone marrow transplant or his underlying condition. The devastating news was that Cian had only months to live.

It was hoped to bring Cian to Boston for a transplant after doctors in Great Ormond Street in London reviewed his case.