“The morning of Friday, January 13, 2017, Natalie got up from a full night of sleep. I had already left for work and dad was in charge of getting the kids ready for school. Natalie came downstairs complaining of back pain. Her dad just assumed she had slept wrong and it would go away. Natalie visited the nurse at dismissal and called my husband to explain the pain did not go away; it hurt a lot more. My husband and I were still at work at least 30-40 minutes away from the school, so he asked her if she would be okay to take the bus home since they were all leaving to get on the bus (we lived two minutes away from school). She said yes. As she was waiting for her bus to approach, she said her left leg gave out and both legs felt numb. My husband had his mother meet her at the bus stop. She was crying in pain and barely made it to her bed. I got off work at 4:00 p.m. and my normal routine was to call the family and check in. I was told about Natalie and her back pain. I called the doctor’s office and I quickly explained what was going on with Natalie and asked if they could do X-Rays. They told me take her straight to the emergency room.
When I got home, poor Natalie was in bed and in pain. Her grandmother was sitting right beside her with our dog Edward. She couldn’t even walk. I carried her to the car, and we proceeded to the emergency room. Luckily, we live around the corner from the hospital. I pulled up, got a wheelchair and the nice security guard stayed with her while I parked the car. At this time dad was on the way. I quickly asked for prayers because what was wrong with our daughter! We checked in and started the wait. Natalie kept getting worse and having to use the bathroom, but every time I took her, she couldn’t go and she was slowly not able to hold herself up on the toilet.
We were finally being taken into the back, the wait seemed like forever – at least two hours sitting there. The doctor and nurse were super nice and tried to figure out what was going on. Natalie kept saying she had to use the bathroom and wanted me to give her some privacy, so I stood outside the door. When I peeked in to check on her, she was barely hanging on. I told the nurse, ‘We are not leaving until you figure out what is wrong with her.’ She agreed and assured me they would do everything they had to. The doctor was stumped, and Natalie couldn’t even hold herself up anymore. We heard the Doctor say to the nurse, ‘We are not taking any more patients until we figure this out.’ The Doctor was calling all specialized hospitals to see what he could be missing and what he should do next.
My husband ran home to fill in the family and grab Natalie’s favorite blanket and stuffed kitty. While he left, Natalie became exhausted and fell asleep. The Doctor tried an anal exam that the neuro team at another hospital told him to try; when he does this my heart sank. When I saw this, I knew something was terribly wrong. I called my husband and told him, ‘It doesn’t look good.’ They straight away called an ambulance to take her to a nearby children’s hospital. They agreed it would be quicker if she flew. They canceled the ambulance, then airlifted. Our poor daughter couldn’t take either one of us with her, so we just watched in disbelief that this was happening to us. I couldn’t believe this was happening to our happy little girl.
We drove to the hospital where she was taken to, and although it’s only a 30-minute drive, it felt like we were driving for hours. It was the slowest ride ever. She was waiting in the back for us when we got there. The hospital was already waiting for her and they were super fragile with her. They changed her robe and got her comfortable. There were so many doctors coming in and out and were hooking her up to all these machines. I do remember them telling us we needed to keep her still and calm. They put us in a room with her while we waited for more information. The team of Doctors wanted to wait and watch to make sure her injury did not go further. By the time she arrived at the hospital, she could no longer feel her legs and belly and part of her chest. They wanted her to stay stable – it worked. It did not go any higher; if it had, they would have had to intubate. She could breathe on her own. Thank you, God.
Once they had her stable, it was time to figure what caused this. They took her for her first MRI, which seemed like forever. She didn’t even move during the process. We had teams of doctors, I remember it being in the middle of the night and my husband and I calling our family and filling them in. I also remember them saying, ‘I have never seen an MRI done so quickly.’ We got the results fast too. Natalie has the best team of doctors. They did CAT scans and a spinal tap. Natalie was so brave. Our poor girl woke the next day being paralyzed from the upper chest down, T4/5 incomplete. They came to the conclusion from all the tests she had a spinal infarction, which is a spinal stroke. They had every doctor in there trying to find the main cause. To this day, almost five years later, we still don’t know.
Doctors would tell us our new fate: our daughter Natalie would no longer walk. She couldn’t even sit up without falling over. Our eleven-year-old daughter had become a six-month-old all over again. Her body had gone through so much. I remember the doctors having a meeting with us about Natalie’s new life. My husband, such a believer, told them, ‘My daughter is going to prove you wrong; you wait and see.’ I became numb to the in and out of living in the hospital. Natalie was put into rehab and doing therapy every day up to five hours per day. She became quick friends with nurses, doctors and all her therapists. Everyday, her brother and sister would come up to see her after school and family from everywhere came to visit any chance they could. The support of friends, the town and even people we never knew left us completely speechless. The love they gave our daughter still to this day, we are so grateful for them.
After being in the hospital for a month, we hit the ground running. Our daughter was going to be put in every therapy we could get her in. We did private and through insurance. Natalie blew us away with her hard work and her progress. She was proving the doctors wrong and her dad right!! The first three years of her rehab, we got the opportunity to take Natalie to Maryland to Kennedy Krieger Brain and Spinal Institute for inpatient therapy the first year and outpatient the next two during the summer. It was exactly what Natalie needed. They pushed her to do things we didn’t think she could do at the time. The first time there, they had her walking with a walker – it blew our mind! We were always working with her, even at home when she didn’t have therapy. Natalie had to go through a lot of changes with her body. She had good days and bad days. We had to find our new balance and figure out our new normal as a family.
Our daughter Natalie was a happy little eleven-year-old. She loved to be outdoors, playing with her friends. She loved Gymnastics. She was always practicing every chance she got. She had the most contagious laugh. She was always so spunky. Some of these things have changed, but her spirt is the same.
Every day was like Christmas. Every day was a gift with her. We know this awful thing happened, but we were so grateful to have her here with us. It could have been so much worse for her. Natalie can now move her left leg on command. The right leg does not move by itself, but it follows the left leg. She does not feel any pain and cannot feel hot or cold. She can feel touch. Natalie has some great friends who have been with her throughout her journey. Natalie continues to do therapy once a week and walks with a walker while at home. Natalie is learning to build up her endurance. Natalie may have had a lot happen to her, but she can do everything everyone else can. She’s currently learning to drive and wants to be a pediatric nurse. She has a clear vision of what she wants for her life. She is very independent. She is now playing adaptive tennis and loves it. She is setting out to accomplish all her goals. Our family has had a lot of changes, but we always remained strong and optimistic.”
This story was submitted to Love What Matters by Natalie’s mother, Margaret Bentos-Pereira of Rock Hill, SC. You can follow her journey on Instagram, Facebook, and YouTube. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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