Nash Stineman is like most toddlers. He loves cars and balls. But he can’t play like most toddlers. Nash has been diagnosed with SMARD – Spinal Muscular Atrophy with Respiratory Distress.
Nash’s parents, Brittany and Bobby Stineman, said a person is five times more likely to win the lottery than inherit the rare disease.
"He inherited a bad copy of a gene from both my husband and myself," said Brittany Stineman. "It affects his ability to do everything from breathing, eating, walking, talking."
Nash has to go on a ventilator when he sleeps and has therapists visit his Lincolnshire home four days a week, but the Stineman’s believe Nash can thrive.
"Hope is literally all that we have," Brittany said. "Every day is a challenge, but it’s one that we are willing to take on."
The Stineman family started the non-profit "smashSMARD" and are raising money for gene therapy research with the hashtag #smashSMARDchallenge, where those raising funds smash a pie in their face and share the video on social media to raise awareness.
Even though they have no connection to the Stineman family, students at Sherwood Elementary School in Highland Park just participated in the challenge last week, raising $466. The students who raise the most money then smashed whipped cream pies in the faces of their principal, teachers and fellow students.
"Teaching these kids how to be good humans is the most important thing and that school is doing an awesome job," Brittany Stineman said.
The Stineman family hopes #smashSMARDchallenge takes off so the non-profit can fund gene therapy treatments that researchers say looks promising for Nash and the other 60 children in the world who share his rare diagnosis.
The non-profit is trying to raise $1.5 million to fund a human clinical trial in Ohio in 2020, and the Stinemans say they are willing to take on the challenge.
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"I have said I wouldn’t change my circumstances. I wouldn’t choose them, but I wouldn’t change them," Brittany said. "I so feel that our family was given this mountain because we will show that it can be moved. We will."
