When Nash turned eleven months old, his parents received devastating news: their infant boy was unlikely to reach his second birthday. His mother Brittany Stineman could not fathom being the one to learn such terrible information about her child’s future.
“He was in the hospital for seven months. I didn’t understand any of it the day of the diagnosis.”
A group of healthcare professionals including a group of geneticists, PICU doctors, a social worker, and a nurse informed the family about their son Nash’s death. These individuals attempted to break the news to the family as gently as possible – but it was particularly hard for Brittany and her spouse to learn that their youngster would not survive into adulthood.
When meeting with the parents of the ill baby boy, the geneticist informed them that he had “never seen this before” when it came to caring for a small child. Nash was diagnosed with spinal muscular atrophy, which is a very uncommon disease called respiratory distress type 1.
Nash’s mom said that she felt as she was “shot in the heart by the words I thought I could never handle.”
According to the report, Nash was sick because of his parents. Both mom and dad had a genetic mutation on one of their genes that was inherited by the newborn baby boy. The doctors, on the other hand, informed Brittany that it was more probable for someone to win the lottery than have a kid with another individual with the same gene deficiency.
Brittany and her spouse, Bobby, had been in love since they were fourteen years old. They had no idea their affection for one other would lead to a sick youngster who was not expected to survive beyond his second year of life.
He’s just one of a hundred or so children around the world who have the same problem. The uncommon sickness that kills most infants before they reach their first birthday is known as SMARD – spinal muscular atrophy with respiratory distress. There is currently no cure for this rare disease, which kills most children under the age of six.
The majority of SMARD cases require tracheostomies in order for the kids to breathe. Fortunately, Nash did not require one. Even though he had a foot drop, Nash retained his hands and legs’ full function.
Despite the awful diagnosis, somehow Nash survived. He was extubated six times and lived each time. Other SMARD kids were unable to combat health issues, but Nash battled septic pneumonia with a punctured lung and rhino enterovirus. And at the end of it all, he survived his second birthday before having his third.
“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 the purpose that I always knew I had.”
Brittany has had a hard time.
“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!”
Finally, her hometown organized a celebration in honor of Nash’s third birthday.
