According to the official Twitter account of the Disability Justice Initiative at the Center for American Progress, Disability Pride Month is more than just representation and inclusion. “It’s about building and uplifting community, taking action, and building networks. Now, more than ever, we need to support the most vulnerable in the community.”
Celsey (@celsey.jo), a self-described “medical mama,” went viral when she shared her 2-year-old son Harrison’s story with the world. Born at just 27 weeks, Harrison would spend the first eight months of his life in the neonatal intensive care unit (NICU) — an emotionally traumatizing experience for his whole family.
But despite his medical challenges — such as his tracheostomy and gastrostomy tubes — Harrison hasn’t let anything get him down, according to his mom.
In a Storytime video, Celsey recounted Harrison’s harrowing journey. “When I was 27 weeks, the doctor told me I had to delivery Harrison now, or he was going to die. So we had an emergency C-section. He was born weighing 1 pound 6 ounces and was 11 inches long,” she recalled.
“We were told he had a brain disorder, his lungs and kidneys were bad, something was wrong with his heart, and they suspected a genetic disorder.”
“He had a level 3 brain bleed (level 4 is the highest). He developed osteopenia of prematurity that caused breaks and fractures all over his little body. I watched my son die in front of me more times than I’d like to count,” Celsey continued.
“But Harrison is a warrior! And today, Harrison’s only issue is his lungs. No brain disorder. No heart or kidney issues. And he has absolutely no genetic issue.”
TikTokers were moved by Celsey and Harrison’s emotional medical journey.
“I love it. there’s nothing like being the mom of a warrior,” one user wrote.
“Your son is such a happy, loving and beautiful boy.💙 I am a retired NICU and PICU Nurse and he will do great❤ He has a fighter spirit. God Bless🙏🙏,” wrote one user.
“Former NICU RN here…yes baby boy! I really needed to see this tonight! ❤️,” another comment read.
Today, Harrison continues to overcome his medical challenges. Last year, doctors took Harrison off his ventilator — and soon, they hope to be removing his tracheostomy tube altogether, with the help of reconstructive surgery of his airways.
Here’s to hoping for many more viral videos of Harrison, defying all the odds.
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If you enjoyed this story, check out this teenage-led website that’s “by and for” young people with disabilities.