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A million for a child in a million

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Cian McDonnell-Lynch[/caption]

By Ray O’Hanlon
rohanlon@irishecho.com

It’s a lot of money, but what value a young boy’s life?

A family in Ireland has launched an urgent international appeal to raise €1 million ($1.16m) to fund a major life-saving operation for their four-year old son to be carried out in Boston.

The parents of Cian McDonnell-Lynch of Carlanstown, Kells, County Meath, who suffers from a rare disorder, flew their son to the U.S. on Thursday of last week.

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This week, Cian is being assessed to determine if he can receive a double lung transplant.
The potential cost of the operation is expected to be just under one million euro but the after-care treatment could be double that fee, a cost which the family cannot afford.

According to Mandy Shipp of the local fundraising committee, “This is a do or die situation. If this operation is not carried out, he is unlikely to live beyond Christmas.”

The four-year old suffers from Revesz Syndrome, a rare genetic form of Dyskeratosis Congenita, which effects one child in every one million.

Revesz Syndrome is the failure of the bone marrow to produce normal blood cells.
Cian is believed to be the only child in Ireland suffering from the condition.

In March 2011, at the age of one, Cian was declared totally blind and shortly thereafter was diagnosed as having deteriorating bone marrow.

In 2013, he underwent a successful bone marrow transplant operation in Crumlin Children’s Hospital in Dublin.

“We were really optimistic following that operation that his condition was not going to weaken any further. He went to playschool after that and we thought the worst was behind him,” said Mandy Shipp.

However, earlier this year, Cian began to struggle with his breathing.

In January Cian spent five weeks in hospital where he was eventually diagnosed with microscopic pulmonary arteriovenous malformation which equates to tiny pinholes in his lungs.

Crumlin Children’s Hospital referred Cian’s case to Great Ormond St. Hospital in London where they specialize in transplants for children.

Doctors in London deemed Cian as being an unsuitable candidate for a transplant.

However, doctors at Boston Children’s Hospital in Massachusetts indicated recently that they might be in a position to formally assess Cian’s current position.

“Basically Boston is Cian’s last hope of survival and the fees are astronomical by Irish standards,” said Mandy.

“We need the best part of one million euro in order for him to be on the list for a lung donation.”

A group of parents and friends in the Kells/Carlanstown area have established a fund-raising committee through the ‘gofundme.com/hopeforcian” web portal and Hope for Cian/Facebook page.

At the l;ast estimate, close to €240,000 had been raised and a number of fund-raising events in the region are planned in the coming weeks.

“We need every cent we can get from wherever. We are way short of our target. We can’t let money be the reason Cian loses his fight,” said Mandy.

More details by emailing hopeforcian@gmail.com.