Paralyzed twice by rare genetic disorder
Within 30 minutes of his arrival, a team of doctors, nurses, and therapists surrounded Daniel’s bed. He was completely paralyzed and unable to communicate except for blinking once for yes and twice for no. In their respectful and nurturing manner, the team engaged Daniel and got to know him very quickly. Not a moment was wasted in developing a treatment plan and after 4 months of grueling and intensive therapies, Daniel was taking steps, breathing off the ventilator, talking, and eating real food.
Fast-forward 12 years to August 2016. Daniel had been a healthy child and adolescent with minimal residual effects of Guillain-Barre Syndrome. Working as an assistant camp counselor in Brooklyn, Daniel was ready to enter his senior year of high school and apply to colleges.
One day, his legs felt week and he was having trouble swallowing. His parents sensed what was happening, and immediately they were back in intensive care with the same diagnosis. Again, rapid paralysis set in and Daniel had a tracheostomy and a feeding tube. After 3 weeks of intensive care, he returned to Children’s Specialized.
Seeing Dr. Fantasia and some of Daniel’s former therapists and nurses was extremely comforting. Once again, the team immediately set out to evaluate Daniel and develop a treatment plan that addressed all of Daniel’s medical, physical and psychological needs, including the complex social and emotional needs of a typically developing teenager.
“As a guitarist, one of my biggest frustrations was that I was unable to play,” said Daniel. “I decided to switch to piano because I would be able to do more with my one functioning hand than I could with guitar. Kassie, my OT, immediately made it a priority during therapy. We designed splints to bring my fingers into a better position and practiced daily on the piano in the lobby. It was as much a priority to Kassie as it was to me that I was able to play and express myself musically.”
“Every day at Children’s Specialized was a miracle,” said Daniel’s mother. “Every day, Daniel was challenged to the limits of his ability by all of his therapists in an expert and dignified manner. Every day, small and large accomplishments, like breathing off the vent, swallowing food, talking, and taking his first steps, were applauded by everyone! And, every day, staff members asked us—the parents—if we needed anything.”
After a four month stay, Daniel left his “extended family” at Children’s Specialized Hospital in the summer of 2017. “We can all agree that the vast majority of people, when asked about their time spent in a hospital, would say something along the lines of: “Glad that’s over” or “Thank God I’m out of that place”, but the same cannot be said for Children’s Specialized,” says Daniel. “Children’s Specialized Hospital is the gold standard, not only for what a hospital should be, but what a home and a family should be as well.”