Community supports Old Pointe Elementary student fighting rare condition
On a Friday the 13th, Rock Hill student Natalie Bentos-Pereira lost her ability to walk, but her spirit remains strong.
On Jan. 13, 11-year-old Natalie woke with upper back pain, something her father attributed to sleeping wrong, said her mother Margaret Bentos-Pereira. As the pain continually worsened throughout the day, it indicated something was wrong.
After she finished school at Old Pointe Elementary that day, Natalie sat to wait for the school bus, but as she went to stand up, her left leg was numb.
Before she got that news, Bentos-Pereira said she was admiring the weather and was looking forward to watching her children play when she got home. “It was a beautiful day that day,” she said.
Instead, Bentos-Pereira soon was taking her daughter to the emergency room. Tests showed the problem was neurological in nature and Natalie was air-lifted to Levine Children’s Hospital in Charlotte.
“They did everything really quickly, but by the time she got to Levine, her whole body from the chest down was already numb,” Bentos-Pereira said. “It had already spread.”
Bentos-Pereira said blood work, scans and a spinal tap showed that Natalie had suffered a spinal stroke, a condition characterized by the disruption of blood supply to the spinal cord typically caused by the thickening or closing of the spinal cord’s major arteries, according to the National Institute of Neurological Disorders and Stroke, or NINDS.
Spinal strokes, a rare condition in children, can lead to back pain, weakness in the legs and paralysis, according to the NINDS. Physical and occupational therapy often is used to help individuals recover. Paralysis can last for many weeks for some and is permanent for others, but most of those who suffer spinal strokes have a good chance of recovering.
After spending five weeks in the hospital, Natalie is home and continuing numerous therapies, Bentos-Pereira said. Once a week, Natalie attends Race to Walk in Mooresville, a specialized exercise program designed to complement traditional hospital therapies.
Natalie also swims and goes to TherapyWords 4 Kids in Indian Land three times a week. She now can sit up on her own for longer periods of time and is progressing toward moving her leg, Bentos-Pereira said. She said doctors still are not sure what caused Natalie’s stroke and, since it is rare, her prognosis is not well known.
“We don’t know how long anything is going to take. It just depends on her giving it all of what she has,” Bentos-Pereira said. “She’s doing really well. She’s really strong.”
Natalie, a fifth grader, hopes to go back to Old Pointe at the end of March. Her school community has been supportive from the beginning, Bentos-Pereira said.
The second grade class held a bake sale and donated the proceeds to Natalie’s expenses, while many of her peers and teachers have visited her. Even strangers have shared their well-wishes for Natalie’s recovery, Bentos-Pereira said. As of Sunday, a GoFundMe page had raised nearly $6,000 toward the $30,000 goal.
“I can’t believe the support from everyone around,” Bentos-Pereira said. Natalie’s “spirits are really good.”
Want to Help?
Donations are being accepted on Natalie’s GoFundMe page #FightNatFight. A Facebook page has also been set up using the same hashtag. Donations help support Natalie’s unexpected medical costs, including out-of-pocket therapy and medical equipment.