Brittany Stineman felt she had a greater purpose in life, that she would be someone to make a difference in some way, somehow. 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 children like him.
At each checkup, parents are thrilled to discover what height and weight percentile their wee ones are hitting and if they’re nailing those important milestones. Nash presented failure to thrive and 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 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 soul-crushing news.
Nash wouldn’t live more than another year … at the most. He likely would never celebrate his second birthday.
During the initial meeting, the geneticist told Brittany and Bobby that he had “never seen this before.” Brittany had done her research and suspected something mitochondrial, but that wasn’t it. Instead, Nash was diagnosed with a very 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, Bobby and Brittany both had a mutation on a particular gene. They were told that there were 500 times more likely to win the lottery than meet someone else with the same mutation, marry and have a child together.
Bobby and Brittany had been sweethearts since they were 14 and had no idea that their young love would end up yielding a devastating outlook for one of their precious children.
There is no treatment. There is no cure.
Nash is one of only 100 children in the world with this particular version of SMA, Brittany wrote on the SmashSMARD website she created. Most kids with SMARD require tracheostomies due to 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 to slow him down.
Other kids with SMARD cannot extubate after having procedures, but Nash has endured six extubations. Some cannot 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 mobile thanks to a wheelchair.
In the meantime, the Stinemans have teamed up with other families to push foward gene therapy research for SMARD1.
And they celebrate each and every single day that Nash is with them on this 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.”
Caring for Nash and being a mom to him and Blake is more than a full-time job it may seem. But Brittany loves her three guys more than anything and is positive 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 entire hometown was prepared to celebrate in a huge way when Nash surpassed his second birthday and ushered in his third birthday!
Because Nash has a weakened immune system, he cannot be around many people and party it up in a traditional way. He’s never enjoyed a big celebration to honor his young life that could turn the other direction in a heartbeat.
So to honor Nash while keeping a safe distance, the community came together to throw the little boy a big 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.”
“Nash’s story is 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.”
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