Brittany Stineman was told that her son, Nash, wouldn’t live past his second birthday because he had spinal muscular atrophy with respiratory distress – a rare neuromuscular disease. But Nash has been defying the odds ever since his diagnosis and recently, he celebrated his third birthday!
Birthday parties typically look the same for most children. The atmosphere is lively, the food is overflowing, and lots of children are there to share in the happiness of this occasion with the celebrant.
But for Nash, the picture was quite different.
The boy was diagnosed with spinal muscular atrophy with respiratory distress (SMARD1), a disease that causes muscular weakness and a sudden inability to breathe in infants. There is currently no known cure or treatment for it.
Nash had a weakened immune system, which meant that he can’t be around many people to have a conventional birthday party. Knowing this, their neighbors decided to something very special by throwing him a parade Sunday on the eve of his birthday!
“The one missing piece of his life has been social interaction,” Brittany told CNN. “He can’t be around people that much, and yesterday, I felt like that missing piece was filled.”
For more than an hour, over 100 trucks, jeeps, and vehicles of all kinds drove down their neighborhood street in a Chicago suburb to celebrate Nash’s third birthday. Nash gets intravenous nutrition, so instead of throwing out candy, the people replaced it with banana pudding – the only food that he can eat by mouth.
Brittany was overwhelmed with joy seeing how many people showed up to support her son and celebrate his special day.
“Nash’s story is the reason we have so much community support,” she said. “Yesterday was just proof of how much of an impact he has made through his horrible journey.”
Nash was diagnosed with spinal muscular atrophy with respiratory distress when he was 11 months old, and doctors told her and her husband, Bobby, that their baby wouldn’t live past 2 years old.
“He was in the hospital for seven months,” Brittany said. “I didn’t understand any of it the day of the diagnosis.” According to the National Organization for Rare Disorders, it is unknown exactly how many people around the world have it.
After the diagnosis, Brittany reached out to researchers and started a nonprofit named smashSMARD. The organization aims to “find safe and effective treatments and ultimately a cure” for children with rare diseases like Nash. With the help of donors, the organization has raised more than $2 million since February.
To Brittany, the parade was proof that their family and others like them would never run out of support from the community. She is positive that there are better things yet to come for them, and that they will achieve success in their mission of helping other kids with rare diseases.
“It was a magical day,” she said. “It just made me feel so much more hopeful about what the next year could bring.”
Click HERE to make a tax-deductible donation to smashSMARD.
Watch the parade and share this story to raise awareness about rare diseases like SMARD1.
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