According to a story from The Charlotte Weekly, local resident Kevin Tobin recently ran 400 laps around his house—the equivalent of a marathon—to help raise money for Dan Donoher, a one year old boy from Ireland living with spinal muscular atrophy type 1. Kevin, aged 34, is also originally from Ireland. While the state of North Carolina remains in lockdown because of the coronavirus, Kevin and his wife Caitlin were starting to get a bit of cabin fever and were looking for a new way to pass the time in helpful way.
About Spinal Muscular Atrophy (SMA)
Spinal muscular atrophy is a type of neuromuscular disorder in which the motor neurons are destroyed, leading to muscle wasting. Without prompt treatment, the disease is lethal in many cases. This disorder is linked to genetic defects of the SMN1 gene. This gene encodes a protein called SMN, and when not present in certain amounts, neurons are unable to function. There are different kinds of spinal muscular atrophy that are categorized by when symptoms first appear. These symptoms may include loss of reflexes, muscle weakness and poor muscle tone, problems with feeding and swallowing, developmental delays, respiratory muscle weakness, tongue twitching, and a bell shaped torso. The most effective treatment currently available for the disease is called Zolgensma. To learn more about spinal muscular atrophy, click here.
Do It For Dan
Dan’s life will not last long unless he is able to access treatment, which is extremely expensive; a dose of Zolgensma runs for $2.1 million. The family started a GoFundMe campaign titled “Do It For Dan” in a race against time to attempt to raise the money. Kevin reached out to Dan’s family in order to get involved. His goal was to raise $5,000 towards the cause.
Kevin conducted the marathon on April 24th and recorded the event live on his social media accounts. While he has since closed the GoFundMe that he activated for the event, he was able to exceed his $5,000 goal and raise a total of $6,070. On April 25th, Dan’s parents Aisling and Niall announced that they had reached their $2.1 million goal. Remarkably, the family was able to raise the funds in 50 days, a impressive testament to the international solidarity and support they received from contributors like Kevin.
