HARLEM — In less than a month Nyasha Walrond went from being a normal 14-year-old-girl about to finish her freshman year of high school to being paralyzed and bedridden.
In March, Walrond, who already suffered from sickle-cell anemia, was hospitalized with mononucleosis and a urinary tract infection. When she left she began to feel a tingling sensation, then numbness in her fingers and toes. When the numbness spread to her calves and forearms, she went back to the hospital.
“I didn’t know what was going on,” she said. “It feels like I don’t have any control of my body. Like I’m a puppet and somebody else is going to control me.”
Walrond developed Guillain-Barre Syndrome, a rare disorder in which a person’s own immune system attacks their nerve cells, leading to muscle weakness and paralysis. There are between 3,000 and 6,000 cases of GBS in the country each year, according to the Centers for Disease Control and Prevention.
Most people fully recover from GBS but some develop long-term nerve damage. The exact cause of GBS is unknown but it often comes after people suffer from an infectious illness, according to the Mayo Clinic.
In Walrond’s case it struck fast.
She spent the month of April in New York Presbyterian Hospital. GBS took over her entire body and she lost control of her lungs. She couldn't speak and had to breathe with the help of a respirator, her father Nykie Walrond said.
“I don’t know what hell is like but I think this is it,” he said. “Seeing your own flesh and blood go through something of this magnitude is the worst thing in the world. There is nothing you can do to take it away. The only thing you can do is wait."
Walrond, a carpenter and handyman, has put life on hold to be with his daughter. When she was transferred to Blythedale Children's Hospital in Valhalla, he moved into the hospital.
He sleeps on a small hospital bed next to Nyasha. Under the bed are drawers stuffed with canned food, noodle soups, and macaroni and cheese.
Every day he washes his daughter’s face and does her hair. Because she can’t close her eyes he has to periodically administer water drops to keep them moist. The longest he is away is 10-minute smoking breaks he takes outside the hospital, he said.
Since moving to the children's hospital, Walrond has started to regain control of her body. She can breathe on her own and is able to speak. She can also move part of her upper lip and eyebrows.
She has turned her attention to spreading awareness of the rare disorder that has taken over her life.
"It just comes out of nowhere," she said. "It would be great for more people to know about it because it could happen to anybody."
Her father and stepmother, Jenna Milazzo, started a crowdfunding page to raise money for Walrond's medical expenses. Five percent of the money raised will be donated to The GBS/CIDP Foundation International, an organization that supports people with GBS, Milazzo said.
The rest of the money will go toward preparing for life outside the hospital. Walrond lived with her mother in Harlem but will move with her father in Washington Heights when she is released, he said.
It is very likely that she will come back in a wheelchair so they need to renovate their apartment to make it wheelchair-accessible, he added
While insurance is covering most of her hospital stay, it may not cover outpatient treatment or any specialized care like hydrotherapy, he said.
While most people who suffer from GBS make a full recovery, it's unclear how Walrond will bounce back, her father said.
The teenager is just trying to focus on improving a little bit each day.
“I just hope that I get stronger every day," she said. "Every day that I get stronger it brings me closer to leaving the hospital."
She misses being able to do things she previously took for granted, like eating solid foods, being able to pour herself a cup of water or going shopping on 125th Street with her friends, she said.
“I just want to be able to have my life back,” she said. “I want to go back to hanging out with my friends, I want to pick up my little sister.”