Doctors Didn't Think This Little Boy Would Live Past His Second Birthday, His Neighborhood Just Threw A Parade For His Third
Brittany Stineman was told her son, Nash, wouldn't survive past his second birthday. When he turned three, his neighborhood in Chicago threw him a birthday parade to celebrate. The boy's impaired immune system means he can't be around large numbers of people, so the townsfolk opted for a parade instead of a party.
Nash was born with a very rare disease called spinal muscular atrophy with respiratory distress, or SMARD for short. Infants suffer from a weak cry, poor feeding, and repeated bouts of pneumonia, and then they just suddenly stop being able to breath. Many affected babies die because no one notices they stopped breathing in time to provide help. They also suffer from progressive muscle weakness and rapidly end up in a wheelchair
Nash and his family watched his parade together; more than a hundred decorated vehicles turned out to drive past their house to celebrate his birthday reported CBS Chicago. "The one missing piece of his life has been social interaction," Stineman told CBS News. "He can't be around people that much, and yesterday, I felt like that missing piece was filled," said Stineman, who was very moved by the show of community support.
After the parade, Nash celebrated further by eating banana pudding. It is the only thing he consumes by mouth; due to his weakened ability to chew and swallow, he receives intravenous nutrition.
Nash received his diagnosis at age 11 months and then spent the next 7 months in the hospital. His mother says she didn't really understand any of what she was told about her son's condition at first. She has since then done extensive research on the condition and started her own foundation, Smash SMARD, that has raised two million dollars to help find a cure or treatment.
SMARD is a very rare condition and only around 60 cases have ever been reported, according to the National Organization for Rare Disorders. It is caused by a mutation in a gene called immunoglobulin mu DNA binding protein 2. Affected children who are rescued from death and placed on a respirator deteriorate for the first two years of life, but they tend to stabilize after that. Around two-thirds are able to attend school and the condition does not seem to affect cognitive development.
This amazing story of community support for a brave child needs to be spread far and wide.