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Dan Donoher is the 14-month-old son of former Laois county footballers Niall Donoher and Sarah Quigley who last December was diagnosed with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1and Scoliosis.
Essentially it is a muscle-wasting disease which has already robbed Dan of his ability to lift his legs, maintain head control, and lie on his belly.
And because his muscles are too weak for a strong cough, mucus can get trapped in his lungs which makes breathing more difficult for him and a common cold life-threatening.
The life expectancy of a SMA type 1 child is 18-24 months, but there is now a ground-breaking once-off infusion treatment called Zolgensma which can substantially improve the quality of life and survival of the disease.
The only problem is that it costs roughly €2Million and is only available in the USA.
Essentially it is a muscle-wasting disease which has already robbed Dan of his ability to lift his legs, maintain head control, and lie on his belly.
And because his muscles are too weak for a strong cough, mucus can get trapped in his lungs which makes breathing more difficult for him and a common cold life-threatening.
The life expectancy of a SMA type 1 child is 18-24 months, but there is now a ground-breaking once-off infusion treatment called Zolgensma which can substantially improve the quality of life and survival of the disease.
The only problem is that it costs roughly €2Million and is only available in the USA.
Co-organizers4
Kenneth Morgan
Organizer

