Wednesday 26 October 2016

Family hope transplant will help brave Cian (4) battle rare disorder


Cian McDonald
Cian McDonald
Cian McDonnell Lynch has been left blind and very short of breath by the rare condition.

A massive effort is being made to raise €1m to save the life of a four-year-old boy.

Cian McDonnell Lynch (4) is urgently in need of double lung transplant surgery in the US after he was born with an extremely rare blood disorder.

Along with his parents Lisa and Donal, and sister Chloe (14), Cian from Carlanstown, Co Meath has travelled to Boston, Massachusetts, for assessment to determine his eligibility for the specialised operation.

Cian - who was born two months premature - suffers from Revesz Syndrome which affects ony one child in a million.

The condition is characterised by the failure of bone marrow to produce normal blood cells, and little Cian is completely blind as a result of his illness.

Speaking to the Herald from the US last night, his mother Lisa told of her youngest child's plight.

"Cian has been very breathless over the last week and his oxygen saturation levels are very low at the moment, but the doctors here are giving us a lot more hope," she said.

Over the course of five days, Cian will undergo a series of tests with a respiratory team.

Two years ago, he had a bone marrow transplant operation in Crumlin Children's Hospital, but his illness deteriorated.

In January this year, Lisa noticed her son becoming breathless and very tired, which led to Cian spending five weeks - including his fourth birthday - in Cavan General Hospital.

His case was referred to Great Ormond Street Hospital in London last month, but after a three-day assessment he was deemed unsuitable for a transplant.

His family hope that, if deemed suitable, a double lung transplant in Boston Children's Hospital will improve his plight. However it will cost up to €1m.

"Everyone at Crumlin Hospital has also been brilliant and so supportive of any decisions we make, including coming to Boston," Lisa said.

To date €60,000 has been raised.


"From what we can see, the fundraising seems to be doing brilliantly and the response has been unbelievable," Lisa said.

"If this operation is not carried out, he is unlikely to live beyond Christmas," said Mandy Shipp, secretary of the Hope for Cian campaign.

"It's tough now because he is so small and at that age where he just wants to be able to get up and about. Time is really against him."

Donations to the fundraising account can be made by logging on to http://www.gofundme.com/hopeforcian.

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