Campaign launched to raise funds for boy (4) with rare illness

A campaign to raise funds for a four-year-old boy with a rare illness has been launched in Co Meath.

Hope for Cian aims to raise funds for Cian McDonnell Lynch, of Carlanstown, Kells, who suffers from Revesz Syndrome, a severe form of bone marrow disease, which affects one child in a million.

He also has microscopic pulmonary arteriovenous malformation, a malformation of the lungs.

Though he has been deemed an unsuitable candidate for a lung transplant at Great Ormond Street Hospital in London, his parents, Lisa and Donal, hope Boston Children's Hospital in Massachusetts will accept him as a patient.

The four-year-old travelled with his parents last Thursday to Boston, where medics will assess if he is suitable for a double lung transplant.

Additional costs

Cian, who is also blind, had a successful bone marrow transplant in Crumlin Children's Hospital in Dublin in 2013 and was referred to Great Ormond Street earlier this year.

The potential cost of the operation in the US is expected to be just under €1 million, with additional costs for after-care treatment.

A group of parents and friends of the family in the Kells and Carlanstown area have established a fund-raising committee, a Facebook campaign and a funding page at gofundme.com/hopeforcian.

Mandy Shipp, from the fundraising committee, said it was a “do or die” situation.

“If this operation is not carried out, he is unlikely to live beyond Christmas,” she said. “Boston is Cian’s last hope of survival.”

She said the group had raised nearly €180,000 and a number of fund-raising events were planned in the coming weeks.

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