Good things need to be celebrated, no matter of how big or small they are or whether they are “all-good” or just silver linings to an underlying misfortune. This is the case of Nash Stineman, a three-year-old kid whose town just threw a parade because he got to that age despite suffering from a rare neuromuscular disease.
Nash suffers from SMARD – a rare type of spinal muscular atrophy with respiratory distress (1). The condition causes muscle weakness and leads to an inability to breathe. What’s more – there’s no known cure.
SMARD is so devastating that when Nash was diagnosed at the age of 11 months, the doctors told his mother – Brittany Stineman – that he wouldn’t live past his second birthday. The condition is so rare that it’s not even clear how many people actually have it (2).
It was that dark diagnosis that prompted the entire community of the Stinemans’ Chicago suburb to throw a parade in Nash’s honor on the Sunday eve of his third birthday. For more than an hour, over one hundred cars, jeeps, and trucks drove down the Stinemans’ street to celebrate the little boy.
Instead of having a cake or throwing candy like any other parade, for Nash’s parade there was banana pudding. That’s because it’s the only food Nash can eat by mouth as he gets intravenous nutrition.
“Nash’s story is the reason we have so much community support, (3)” Brittany Stineman said. “Yesterday was just proof of how much of an impact he has made through his horrible journey. He was in the hospital for seven months,” Stineman added. “I didn’t understand any of it the day of the diagnosis.”
Brittany is not just happy for her son’s accomplishment, however – she’s also working to help others in their help against the horrible disease. She has started her own non-profit organization called “Smash SMARD” and through it, she aims to find and fund effective treatments for kids like Nash (4). So far this year, the non-profit has raised over $2 million. That and the parade in honor of Nash’s birthday served as excellent ways to bring the family’s spirits up and fire them up for the fight ahead.
“It was a magical day,” Brittany Stineman said. “It just made me feel so much more hopeful about what the next year could bring.”
