Brittany Stineman felt like she had a bigger purpose in life, that she would be a person who could make a difference in some way, whatever way. What she didn’t know is that it would be her son Nash who would guide her toward becoming a beacon of hope for other parents with kids like him.
At each and every single checkup, parents are more than happy to find out what height and weight percentile their wee ones are hitting and if they’re nailing those important milestones. Nash presented failure to thrive and also other concerning signs.
“He was in the hospital for seven months. I didn’t understand any of it the day of the diagnosis.”
When he was only 11 months old, a team of geneticists, PICU doctors, a social worker and a nurse sat down with Brittany and her husband Bobby and delivered the heart-crushing news.
Nash wouldn’t live more than another year … at the most. He most likely would never even get to celebrate his second birthday.
During the first meeting, the geneticist told Brittany and Bobby that he had “never seen this before.” Brittany had done her research and thought it was something mitochondrial, but that wasn’t the case. Instead of that, Nash was diagnosed with a super rare disease: spinal muscular atrophy with respiratory distress type 1.
“Shot in the heart by the words I thought I could never handle.”
Technically speaking, both Bobby and Brittany had a mutation on a particular gene. Besides that, they were also told that there were 500 times more likely to win the lottery than meet someone else with the same mutation, marry and have a kid together.
Bobby and Brittany had been sweethearts since they were 14 and didn’t have the slightest idea that their young love would end up yielding a sad outlook for one of their adorable children.
There is no cure. There is no medicament or treatment.
Nash is one of only 100 kids who are in the world with this particular version of SMA, Brittany said on the SmashSMARD website she created. The majority or children with SMARD require tracheostomies because of respiratory failure, but Nash has only battled failure of the left diaphragm. Many children lose function in their distal muscles, but Nash has full function of his legs and hands, only a foot drop just to slow him down.
Other kids with SMARD cannot extubate after having procedures, but Nash has been through six extubations. Some of them are not able to battle respiratory infections but Nash had fought and beaten septic pneumonia with a collapsed lung and rhino enterovirus. He does have nocturnal ventilation and is able to move thanks to a wheelchair.
In the meantime, the Stinemans have teamed up with other families in order to push foward gene therapy research for SMARD1.
And they also celebrate every single day that Nash is with them on Earth.
“We are devastated by the diagnosis, but so thankful that we have one. 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.”
Taking care of Nash and being a mother to him and Blake is more than a full-time job than it seems. But Brittany adores her three boys more than anything and is more than certain that she was meant to be Nash’s mom.
“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? 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!”
Little did Brittany know, but their whole entire hometown was more than ready to celebrate in the best way when Nash hit his second birthday and got closer to his third one!
Because of the fact that Nash has a weakened immune system, he isn’t able to be around a lot of people people and party it up in a traditional way. He has never enjoyed a big celebration in order to honor his young life that could turn the other direction in a heartbeat.
So in order to honor Nash while keeping a safe distance, the community came together to throw the little boy a huge parade the night before his birthday.
“The one missing piece of his life has been social interaction. He can’t be around people that much, and yesterday, I felt like that missing piece was filled.”
Brittany, Bobby, Blake and Nash bundled up and went outside in order to watch even more than 100 vehicles rolled down the family’s neighborhood street in ordee to celebrate Nash’s life.
They didn’t toss out candy, but while also keeping Nash’s health in mind, they handed out banana pudding. It’s the only food the little boy manages to eat by mouth because his nutrition is always carried out intravenously.
“Nash’s storyis the reason we have so much community support. Yesterday was just proof of how much of an impact he has made through his horrible journey. It was a magical day. It just made me feel so much more hopeful about what the next year could bring.”
Being able to see Nash’s reaction to the parade planned specifically for him was worth every second of work which was put into the event. What a brave and awesome little boy!
Be sure to watch his cute response in the video down below and grab a tissue.
A little boy living with a rare neuromuscular disease just received a parade in honor of his third birthday. gma.abc/2OqAmox
Posted by Good Morning America on Sunday, December 1, 2019