Saturday 10 December 2016

Parents of seriously ill Cian (4) say lung transplant is their only hope: ‘Doctors gave us months but we can’t give up on him’

Published 23/07/2015 | 15:15

Dyskeratosis Congenita is a bone marrow failure syndrome
Dyskeratosis Congenita is a bone marrow failure syndrome
Cian pictured with Nurse Sinead in Cavan General Hospital
PJ Gallagher with Cian McDonnell-Lynch
Donal Lynch and Lisa McDonnell were told by Irish doctors that their son Cian (4) had just months to live

The parents of a seriously ill child hope to raise the funds needed to save the life of their four-year-old son who desperately needs a lung transplant.

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Donal Lynch and Lisa McDonnell were told by Irish doctors that their son Cian (4) had just months to live due to rare syndrome Dyskeratosis Congenita and say a transplant is his only hope.

“We were told two months ago that there was nothing more that could be done and he only had weeks left to live,” said Cian’s mother Lisa.

“We insisted and wanted him looked at further and his files were transferred to Great Ormond Street in London where they were reviewed and we’re waiting on news back to see if they will accept him for a lung transplant and if they won’t  we’re in touch with Boston Children’s Hospital,” she said speaking to The Anton Savage Show on Today FM.

Dyskeratosis Congenita is a bone marrow failure syndrome which has left Cian blind. The four-year-old also suffers from rare condition Pulmonary arteriovenous malformation which causes abnormalities in his lungs.

Although Cian’s parents are hoping that he will be approved for surgery in London’s Great Ormond Street Hospital, they hope to raise funds should they need to travel to the US to save their child’s life.

“Irish doctors..they gave us months but we can’t give up on him,” said Donal.

“They assessed him in Great Ormond Street for three days last week. We’re looking at Boston right now because it’s probably our last chance to save his life.

“We were in Boston in October and met with these wonderful doctors and Lisa has been emailing. The doctor has been doing research on Dyskeratosis Congenita  he wants us to go to Boston.

“He’s given us a lot more hope.

“We don’t know an exact cost.  The committee that has been set up for Cian has estimated it will cost €500,000 but we could be looking at an awful lot more.

“We don’t know for sure,” said Lisa.

A committee has been set up to help raise much needed funds to support the family in their time of need as they hold out hope for approval in the US.

“There’s a fantastic committee that’s been set up and Cian’s Facebook page has attracted so much support from people we don’t even know.

“He’s aware that something is going on. We don’t talk about it in front of him because he’s very clever,” said Lisa.

“He’s just a normal four year old boy.  He loves life and is full of chat. This his only hope of survival.”

To support 'Hope for Cian' text 'Cian' 57802

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