Efforts have gotten underway to raise badly needed funds to pay for life-saving treatment for a toddler with a rare neuromuscular disease in the midlands.
Dan Donoher – who will turn one year old at the end of this month – was diagnosed with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis back in December 2019.
The child is the son of Niall and Aisling Donoher, who are both former Laois senior footballers and farmers, from Ballybrittas, Co. Laois.
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 Donoher with his parents Aisling and Niall. Image source: Do it for Dan Facebook
To raise funds needed, Dan’s parents and family set up a GoFundMe page, appropriately named ‘Do it for Dan’.
On the page, Dan’s parents explain what the child has had to go through:
“Dan was eight 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 ventilator support. Dan’s muscles are too weak for a strong cough.
The boy’s family explained that Dan began a new medication called Spinraza in early January. The only available treatment in Ireland, Spinraza does not cure SMA type 1 but can delay or reduce the symptoms.
However, the Do it for Dan campaign highlighted that a cure may be possible: “A ground-breaking treatment called Zolgensma, which is currently only available in the US and costs US$2.1 million (€2 million) for a once-off infusion.
Image source: Do it for Dan Facebook
“Zolgensma is gene therapy and can only be given to kids under the age of two who meet the necessery health requirments. Dan currently meets these requirments but we are against the clock.
“This treatment is designed to deliver a functional copy of the gene that Dan is missing (SMN 1).
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 an 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 [his favourite] yellow ball,” his parents conclude.
Since the fundraiser page was launched six days ago, there has been a remarkable response – with more than €299,800 raised from 9,100 donors in that time-frame.
However, there is still a long way to go to reach the eye-watering amount needed – and a plea for donations, regardless of how big or small, has been made by Dan’s family: “Every little helps – do it for Dan.”