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Family From Ireland Hopes Boston Doctors Can Save Boy's Life

BOSTON (CBS) -- Cian McDonnell-Lynch is just four years old.

He's been given until Christmas to live.

His family, saying they refuse to give up, has traveled to Boston Children's Hospital in the hopes that one of the world's premiere hospitals can help keep him alive.

Cian has been fighting an often deadly bone marrow disorder called Dyskeratosis Congenita since birth.

"It's a very rare disease," his mother, Lisa McDonnell, told WBZ-TV Tuesday.

"It affects one in a million. And Cian is actually at the more severe end of the syndrome."

Cian McDonnell-Lynch
Cian McDonnell-Lynch and his family in Boston (WBZ-TV)

The disease left Cian permanently blind at the age of one. He did get a successful bone marrow transplant two years ago, but the disease is now affecting his lungs with another rare and deadly disorder, microscopic pulmonary AVMS.

"They're actually microscopic blood vessels; they're malformations," his mother explained. "And the oxygenated blood is not getting around to his whole body."

"We were told today that it's actually progressing very quick, so we're just really really hoping that he'll be accepted onto the transplant list here in Boston."

Cian has been given only a few months to live.

A double-lung transplant would likely save his life, but he was rejected for one at a hospital in London.

"He was the first child that they've seen with this condition," Lisa said. "It's just so rare. I think they're just afraid of what the outcome is going to be. His quality of life afterwards. But we just can't give up on him."

Cian McDonnell-Lynch
Cian McDonnell-Lynch (WBZ-TV)

So Lisa and Cian's father and big sister have come to Boston Children's Hospital as their last hope. The hospital has begun running tests on Cian to determine if his body can handle the transplant.

But if it can, the family's Irish insurance policy will not pay for the surgery here in the sates.

Between the procedure and recovery time, the family will need more than $1 million out-of-pocket to keep their son alive.

That heart-wrenching story has touched off a massive fundraising effort in Ireland that has spread here to the U.S. and as far west as Australia. Well more than 5,000 people around the world have donated close to $200,000 already.

But there's a long way to go.

"It's just so heartwarming to think that everybody cares so much about him," Lisa said. "Everybody is really fighting in our corner, in his corner, and he's going to get the best possible chance."

"Where there's life, there's hope."

If you want to donate, please click here: http://www.gofundme.com/hopeforcian.

You can also learn more about Cian's story at www.hopeforcian.com, and on his Facebook page, "Hope for Cian."

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