'We have seen our child fighting to breathe' One year old Irish boy fights to survive rare muscle wasting disease 7 months ago

'We have seen our child fighting to breathe' One year old Irish boy fights to survive rare muscle wasting disease

"Our hearts were broken."

A one year old Irish boy is fighting to survive a rare muscle wasting disease that has left him unable to lift his head, lie on his stomach, and breathe normally.

Last year, baby Dan was diagnosed with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis.

The muscle wasting disease usually carries a life expectancy of 18 - 24 months. Dan will turn one year old next week.

Parents Aisling and Niall are hopeful that a new drug available in the US will give their son the chance to live a normal life.

"The day he was diagnosed is a day that we will never forget," they say. "Our whole world came crashing down."

"Our hearts were broken. Like all parents, you have so many hopes and dreams for your children.

"Dan is a funny, bubbly little boy who has such a twinkle in his eye. He is such a happy and brave boy despite all this. We are so proud of him."

Dan was diagnosed with the rare disease when he was just eight months old.

Since then, Aisling and Niall have been in and out of hospital as their son struggles to breathe on his own, sleep comfortably, or live a normal life.

Dan loves his dog Bobby, but can't play with him. He enjoys watching GAA, but can't engage in any way. He reaches for his yellow ball, but he can't sit up or move towards it.

"A common cold could end Dan's life," say Aisling and Niall.

"Flu season is life threatening for Dan. He has already been hospitalised due to this which is a fright we will never forget. We have seen our child fighting to breathe. "

This Mother's Day, Dan's parents are asking the Irish public to use whatever money they would have spent on gifts as a donation for the Do It For Dan Trust.

The new treatment called Zolgensma is currently only available in USA, and costs 2.1 million dollars for a once off infusion.

The drug, which is designed to deliver a functional copy of the gene that Dan is missing, can substantially improve a patient's quality of life - and even give Dan the chance to live a normal one.

"About 1 in every 11,000 children are diagnosed with SMA," says Aisling and Niall.

"It had been incurable, but with this wonder drug on the market it offers Dan a chance at improved or even a normal life.

"With this treatment we as parents could hope that one day our son Dan could help his Daddy on the farm, play fetch with his dog Bobby, join his friends outside and simply pick up that yellow ball."

You can check out the Do It For Dan fundraiser here.