Huge support for little Laois boy diagnosed with rare life-threatening disease
'Do it for Dan', the fundraiser for baby Dan Donoher from Ballybrittas, Co. Laois has captured the heart of many to raise over €120,000 on the first day.
A GoFundMe page was launched for the son of Laois football greats Niall and Aisling (nee Quigley) Donoher, 8-month-old Dan was diagnosed with a rare life-threatening disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis. His dad Niall lined out for Laois at all levels prior to his retirement in 2018, the same year he captained his club Courtwood to the Laois IFC, while Aisling was a long-time servant of Timahoe and the Laois Ladies also.
On December 6, 2019, little Dan was diagnosed with the rare genetic neuromuscular disease that has a life expectancy of 18-24 months. In May of last year, a groundbreaking treatment was approved in the US but at a cost of 2.1 million dollars for a once-off infusion.
Zolgensma, the first gene therapy approved to treat children less than two years of age with spinal muscular atrophy, delivers a fully functional copy of the human SMN gene into the target motor neuron cells. A one-time intravenous administration of Zolgensma results in expression of the SMN protein in a child’s motor neurons, which improves muscle movement and function, and survival of a child with SMA. The treatment can substantially improve quality of life, and survival rates of this horrific disease.
At the time of writing, almost 4,000 people have donated a total of €121,000 of their €2 million target as the public continue to flood social media in support of baby Dan.
"The day he was diagnosed is a day that we will never forget, our whole world came crashing down," wrote Dan's parents on the 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."
Dan was 8 months old when he was diagnosed, 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 his life. Flu season is life-threatening for Dan, and he has already been hospitalised due to this.
"This is hard on Dan as he wants to be able to do so much but does not have the ability," wrote his parents.
"Dan loves the farm, his dog Bobby, watching the GAA and his favorite colour is yellow. Dan reaches for his yellow ball but he can’t sit up or move towards it. Dan adores his cousins. He watches them playing and they always entertain him, teaching him new things.
"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."
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