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Boy's family told he wouldn't live past 2nd birthday, then they held a parade for his 3rd

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Boy's family told he wouldn't live past 2nd birthday, so they had parade for his 3rd
Luca Farris/LF Productions
ByNicole Pelletiere
Video byElissa Nunez
November 27, 2019, 10:33 PM

A little boy living with a rare neuromuscular disease just received a parade in honor of his third birthday.

Over 100 trucks, buses, cars and first responder vehicles came to the event held on Nov. 17 in Lincolnshire, Illinois, in celebration of Nash Stineman.

"Nash is the most inspirational human being and the strongest person I know," mom Brittany Stineman told "Good Morning America."

"It was legitimately the most special day in our lives ... and amazing because of all the people that never met him, but stand so strong behind him," she said.

A little boy named Nash Stineman living with a rare neuromuscular disease just received a parade in honor of his third birthday.
Mindy Abern

At 11 months old, Nash was diagnosed with spinal muscular atrophy with respiratory distress (SMARD), which causes muscle weakness and difficulty breathing. The condition is the result of an inherited gene mutation, according to the the Genetic and Rare Diseases Information Center.

To help mark his family's fundraising milestone and Nash Stineman reaching age 3, his neighborhood helped launch a birthday parade.
Brittany Stineman

Nash is the only person in Illinois who's ever been diagnosed with SMARD, Stineman said.

"We were told he wasn't going to live past two years old," Stineman added.

At 11 months old, Nash was diagnosed with spinal muscular atrophy with respiratory distress (SMARD), which causes muscle weakness and difficulty breathing. The condition is the result of an inherited gene mutation.
Brittany Stineman

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Through their nonprofit Smash SMARD, Stineman and her husband Bobby have been working with researchers to find treatment options. So far, they've raised $2 million in hopes of getting their son and other kids like him gene replacement therapy.

Over 100 trucks, buses, cars and first responder vehicles came to the event held on Nov. 17. in Lincolnshire, Illinois, in celebration of Nash Stineman, in celebration of his third brithday.
Luca Farris/LF Productions
Over 100 trucks, buses, cars and first responder vehicles came to the event held on Nov. 17. in Lincolnshire, Illinois, in celebration of Nash Stineman.
Luca Farris/LF Productions

"His life will end if he does not get this treatment," Brittany said. "The plan is the [gene therapy] trial should start by the end of next year."

At 11 months old, Nash Stineman was diagnosed with spinal muscular atrophy with respiratory distress (SMARD), which causes muscle weakness and difficulty breathing.
Mindy Abern

Because Nash's immune system is compromised, he cannot have a typical birthday party and be surrounded by too many people.

To help mark their fundraising milestone and Nash reaching age 3, neighborhood friend Mindy Abern helped launch the birthday parade.

Nash Stineman, 3, is photographed with his father Bobby, mother Brittany, brother Blake, 5 and neighbor, Mindy Abern, on Nov. 17.
Mindy Abern
Over 100 trucks, buses, cars and first responder vehicles came to the event held on Nov. 17. in Lincolnshire, Illinois, in celebration of Nash Stineman.
Mindy Abern

"Nash loves taking walks outside in our town -- he likes watching the cars and trucks drive by," Abern told "GMA." "My idea was that they could drive by and give three beeps for his birthday."

Over 100 trucks, buses, cars and first responder vehicles came to the event held on Nov. 17. in Lincolnshire, Illinois, in celebration of Nash Stineman.
Mindy Abern

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"Local police, firefighters, everyone came out," she added. "It ended up being way larger than I thought."

Over 100 trucks, buses, cars and first responder vehicles came to the event held on Nov. 17. in Lincolnshire, Illinois, in celebration of Nash Stineman.
Mindy Abern

Vehicles lined the street as Nash's 5-year-old brother Blake served as parade marshal. Every bus driver from the school district drove through the block and in lieu of candy, friends gifted Nash with banana pudding since he gets intravenous nutrition.

Friends gifted Nash Stineman, 3, with banana pudding since he gets intravenous nutrition.
Brittany Stineman

"He was extremely happy," Stineman said. "Our community has been so amazing to our family on so many levels."

The Stinemans are asking for donations to their organization, smashsmard.org, to help fund the treatment he needs.

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