Doitfordan

Kilmurry GAA players have decided to do undertake fundraiser to raise money for Do it for Dan in the coming weeks.Our aim is to raise 2,000 euro by undertaking 5Km runs(within 2 Km our of homes) and hopefully run 2,000Km in the process between us all(this could take a while).There is many families throughout Ireland suffering pain and the players at Kilmurry GAA would like to help out in a small way.In these strange times,we should appreciate everything and try and help others. Just a small bit of background information is below towards the cause.




Dans Journey On the 28th of March 2019.Unfortunately, Dan was diagnosed on the 6th December with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis.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). SMA is the progressive loss of motor neurons, which are the nerve cells that control muscle movement. Essentially, it is a muscle wasting disease.  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 damanges the muscles used for swallowing, speaking and breathing along with requiring ventilatory support. On the 7th January 2020, he began a new medication called Spinraza. This is the only available treatment in Ireland for Dan. Spinraza does not cure SMA type 1 but can delay or reduce the symptoms.  A ground breaking treatment called Zolgensma, which 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. 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 1 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.