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Fitness & Health

07th Mar 2020

Laois GAA legends aiming to raise $2.1 million to save their son

JOE

Dan Donoher isn’t even one years of age yet.

The son of two Laois footballing greats, Niall Donoher and Aisling Donoher (nee Quigley), Dan comes from good stock.

On March 28th, 2019, he entered into the world but in December, he was diagnosed with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis. 

What is SMA? 

SMA type 1 is the number one killer of infants under the age of 2. The life expectancy of an SMA type 1 child is 18-24 months. Dan has a deletion of the Survival Motor Neuron 1 gene (SMN 1).  

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 lay on his belly. Dan has the most severe type of SMA, this damages the muscles used for swallowing, speaking and breathing along with long term requirements for ventilatory support.  

Dan’s muscles are too weak for a strong cough. Mucus can get trapped in the lungs of SMA sufferers which makes breathing more difficult for him. A common cold could end his life. He has already been hospitalised for flu. 

“The day he was diagnosed is a day that we will never forget, our whole world came crashing down,” Dan’s mother Aisling said.

“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.

 Hope 

In May 2019, the U.S. Food and Drug Administration approved Zolgensma (onasemnogene abeparvovec-xioi), the first gene therapy approved to treat children less than two years of age with spinal muscular atrophy.

The product delivers a fully functional copy of 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 

Currently this treatment is only available in the USA (yet to be approved in Europe) and costs 2.1 million dollars for a once-off infusion. Zolgensma can substantially improve quality of life, and survival rates of this horrific disease.  

Do it for Dan 

Realising that they are against the clock, a group of close family and friends, along with Niall and Aisling, have begun working tirelessly to establish the ‘do it for Dan’ Foundation which aims to work with them to raise the funds needed to help him undergo the procedure. 

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 his favourite yellow ball,” said Aisling.

How to help? 

  • GoFundMe – do it for Dan has a GoFundMe page and you can donate directly here. 

You can also spread the word on social media, on Instagram, on Facebook and on Twitter.

For any queries please contact: 

Brendan Quigley / Chairperson do it for Dan / [email protected] / +353 85 185 2580 

MJ Tierney / PRO do it for Dan / [email protected] / +353 87 9014263 

 

 

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