Home News Massive fundraiser launched for little boy with rare genetic neuromuscular disease

Massive fundraiser launched for little boy with rare genetic neuromuscular disease

A massive fundraiser has been launched for baby Dan Donoher, son of Niall and Aisling Donoher from Ballybrittas, who has been diagnosed with a rare life-threatening disease.

A GoFundMe page has been set up for the little boy with a genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis. A breakthrough treatment is available in the USA and to meet the cost, a target of €2million has been set.

The page was only launched today and already over €13,000 has been donated from almost 400 different people.

Dan’s parents Niall and Aisling (Nee Quigley) are very well known in the Laois GAA community. Niall represented Laois footballers at all levels until his retirement at the end of the 2018 season while Aisling, originally from Timahoe, played for the Laois ladies team for a long number of years too. The couple live in Jamestown, on the old main Dublin Road near Ballybrittas.

Dan was diagnosed with this disease last December at the age of 8 months.

“The day he was diagnosed is a day that we will never forget, our whole world came crashing down,” wrote his parents on thne GoFundMe page.

“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.”

They go on to explain about Dan’s condition: “At this point he had lost his ability to lift his legs, maintain head control and lie on his belly.

“As Dan has the most severe type of SMA, this damages the muscles used for swallowing, speaking and breathing along with requiring ventilatory support.

“Dan’s muscles are too weak for a strong cough. As his cough is not strong enough, mucus can get trapped in the lungs which makes breathing more difficult for him.

“A common cold could end Dan’s life. Flu season is life threatening for Dan.

“Cognitivially, Dan is fully aware. He has a great attention span and is always interested in the goings on around him. This is hard on Dan as he wants to be able to do so much but does not have the ability.”

The life expectancy of an SMA type 1 child is 18-24 months.

A ground breaking treatment called Zolgensma is currently only available in USA and costs 2.1 million dollars for a once off infusion.

Studies show that Zolgensma can substantially improve quality of life and survival of this horrific disease.

This treatment is only available to children under the age of two and who meet the requirements.

Dan currently qualifies but “we are against the clock” his parents explain.

About one in every 11,000 children are diagnosed with SMA. 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 a ball,” they conclude.

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Megan is currently studying English and New Media at the University of Limerick. A Raheen native, she's happiest when talking sport, especially soccer but just don't mention the 2019 champions league final