Every parent’s worst nightmare is losing a child. The fear is gripping for any parent to think about but for those with children who’ve been diagnosed with a terminal illness, that nightmare-like fear turns into a constantly encroaching reality. This is a reality that parents Brittany and Bobby Stineman were plunged into when they were told their boy, Nash, had a rare genetic neuromuscular disorder.

Diagnosed with SMARD, doctors told the boy’s parents that he likely wouldn’t live to see 2 years of age.

SMARD is short for spinal muscular atrophy with respiratory distress. “It is a progressive genetic motor neuron disease that currently has no treatment or cure,” according to the SMARD website. Essentially, SMARD severely weakens the body’s muscles and makes it very difficult to breathe.

The diagnosis is incredibly rare, and the Stineman’s were shocked when their youngest boy was labeled with it by his doctors.

Nash was only just 11-months-old when he was given the SMARD diagnosis. At the time, doctors told the family that it was likely the little boy wouldn’t make it to his second birthday, but Nash kept on fighting.

“Nash is the most inspirational human being and the strongest person I know,” said the boy’s mom, Brittany Stineman, in an interview with Good Morning America.

The Genetic and Rare Disease Information Center says that SMARD is the result of a rare genetic mutation inherited from the parents. According to the doctors at the time of diagnosis, Nash inherited the mutated gene two-fold.

“after looking at Nash’s blood and comparing it to mine and Bobby’s blood, that we all have a mutation on our IGHMBP2 gene. Statistically, we are 500 times more likely to win the lottery than to meet someone with this mutation, marry that person and have a child with them. Who would have thought that you would be so incompatible with the person that you are most compatible with? We have been together since we were 14,” wrote Brittany on Nash’s SmashSMARD profile.

Since his diagnosis, Nash’s parents have been working tirelessly with doctors, geneticists, researchers and hospitals to raise awareness about SMARD and money to fund gene-replacement therapy as a viable option for treating and one day curing the disease.

Brittany created the SmashSMARD website to facilitate these goals and has managed to already raise over $2,000,000 to put toward them.

Even with all of the negative news, the little boy has continued to be a happy fighter of the rare condition, and surpassed everyone’s expectations this past November when he turned 3-years-old!

To help him celebrate, the entire town of Lincolnshire, Illinois where Nash and his family lives came together to throw him an epic birthday party parade.

Over the course of an hour, over a hundred vehicles lined Nash’s street, including firetrucks and other first responders. Rather than candy, parade-goers tossed out endless packages of banana pudding, as it’s the only food Nash can ingest orally. The rest of his food is delivered intravenously.

“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,” said the boy’s mom.

The parade was organized by a friend from the neighborhood, Mindy Abern, who knows how much Nash loves to watch cars and trucks.

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

“The past 18 months have been exhausting, amazing, heartbreaking, reassuring, high and low. My life has certainly been put into perspective and I feel like I am finally going to have the chance to fulfill my purpose that I always knew I had. Everyone keeps asking me how I am holding it together, and the answer is because I have 2 beautiful children to live for- what is my other option? Sit and cry about Nash’s disease while he smiles himself to sleep? HELL NO, I will not allow his disease to destroy me, him, Blake or Bobby and will continue to spend my energy keeping Nash and our family positive while getting him the best care possible. I will never ask myself, “why us” because quite honestly I know the answer- that we were picked to be his family. I do not want pity and sorrow, but encouragement and positivity. With our family, friends and support group we do know that Nash will continue to live the best life possible,” Brittany concludes on Nash’s SmashSMARD profile.

With all the love and support this little boy has in his life, we’re sure that she’s right. If you would like to make a donation to the SmashSMARD website and toward getting Nash the gene-replacement therapy he needs to continue his life, you can do so here. To see his precious reaction to his entire town throwing a parade in his honor, watch the tear-jerking video below.

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Source: GMA/CNN/SmashSMARD