“On Friday, January 13, 2017, Natalie awoke after a restful night’s sleep. Dad was in charge of getting the kids ready for school because I had already left for work. Natalie was in excruciating agony in her back when she got downstairs. Her father simply assumed she had slept incorrectly and that the problem will go away. Natalie went to the nurse after dismissal and called my husband to say the pain had not gone away and had become much worse. My husband and I were still at work, at least 30-40 minutes away from the school, so he asked her if she would mind taking the bus home because everyone else was (we lived two minutes away from school). Yes, she said. She reported her left leg gave out and both legs felt numb as she waited for her bus to arrive. My husband had her meet her at the bus stop with his mother. She was in excruciating pain and made it to her bed just in time. When I got off work at 4:00 p.m., my usual practice was to call and check in with my family. Natalie’s back problem was mentioned to me. I called the doctor’s office and explained what was wrong with Natalie and requested if X-Rays could be taken. They told me to take her to the emergency department right away.
Natalie was in bed and in agony when I arrived home. Her grandmother sat next to her, along with our dog Edward. She couldn’t even get out of bed. We drove to the emergency room after I carried her to the car. We are fortunate in that we reside just around the corner from the hospital. I arrived, obtained a wheelchair, and the pleasant security guy waited with her while I parked the car. Dad was on his way at the time. What was wrong with our daughter, I promptly sought prayers! We arrived and began our wait. Natalie kept becoming worse and needing to use the bathroom, but she couldn’t go every time I took her, and she was gradually losing her ability to keep herself up on the toilet.
We were finally led to the back, after what seemed like an eternity of waiting — at least two hours. The doctor and nurse were quite pleasant and helpful in determining what was wrong. Natalie kept stating she needed to use the bathroom and that I should stand outside the door to give her some privacy, which I did. She was just hanging on when I peeked in to see how she was doing. ‘We’re not leaving until you figure out what’s wrong with her,’ I told the nurse. She agreed and promised me that they would take care of everything. Natalie couldn’t even keep herself up anymore, and the doctor was stumped. ‘We are not taking any more patients until we work this out,’ the doctor said to the nurse. The Doctor was dialing all of the specialty hospitals to find out what he might be missing and what he should do next.
My husband dashed home to inform the rest of the family and retrieve Natalie’s favorite blanket and toy kitty. Natalie grew fatigued and fell asleep while he was gone. The doctor performed an anal exam that had been recommended by a neuro team at another institution; my heart sunk as he did so. I knew something was seriously wrong when I saw this. ‘It doesn’t look good,’ I told my spouse over the phone. They immediately dispatched an ambulance to transport her to a local children’s hospital. They decided that if she flew, it would be faster. The ambulance was canceled, and the patient was airlifted. We were stunned that this was happening to us because our poor daughter couldn’t take either of us with her. I couldn’t believe our happy little girl was going through this.
We traveled to the hospital where she was taken, and despite the fact that it was only a 30-minute journey, it felt like hours. It was the slowest ride I’d ever experienced. When we arrived, she was waiting for us in the back. The hospital was already waiting for her, and they were extremely concerned about her safety. They changed her robe and made her feel more at ease. So many doctors were coming in and out, wiring her up to all of these gadgets. I recall them telling us that we needed to keep her quiet and still. While we awaited more information, they put us in a room with her. The doctors wanted to keep an eye on her to make sure her injury didn’t worsen. She had lost feeling in her legs, tummy, and part of her chest by the time she arrived at the hospital. They wanted her to be stable, and they succeeded. They wouldn’t have been able to intubate if it had gone any higher. She was capable of breathing on her own. God, thank you.
It was time to figure out what had caused this once she was stabilized. They took her for her first MRI, which took an eternity to complete. During the procedure, she didn’t even move. We had teams of doctors, and I recall my husband and I called our families in the middle of the night to update them. I recall them also commenting, “I have never seen an MRI done that rapidly.” We received the results in a timely manner as well. Natalie has the best medical staff. CAT scans and a spinal tap were performed. Natalie was incredibly brave. The next day, our poor child awoke paralyzed from the upper chest down, T4/5 incomplete. Following all of the tests, they determined that she suffered a spinal infarction, also known as a spine stroke. They brought in every doctor they could think of in order to figure out what was causing the problem. We haven’t figured it out yet, almost five years later.
Doctors would inform us of our daughter Natalie’s latest prognosis: she would no longer be able to walk. She couldn’t even sit up straight without collapsing. Our eleven-year-old daughter had reverted to being a six-month-old. Her body had been through a great deal. I recall the physicians meeting with us to discuss Natalie’s new life. ‘My daughter is going to prove you wrong; you wait and see,’ my husband, a firm believer, told them. I became desensitized to the ins and outs of hospital life. Natalie was admitted to rehab and required five hours of therapy every day. Nurses, doctors, and all of her therapists quickly made friends with her. Every day after school, her brother and sister would come up to see her, and family members from all over came to see her whenever they could. The outpouring of support from friends, the community, and even strangers left us dumbfounded. We are eternally grateful for the affection they showered on our baby.
We were able to get back on our feet after a month in the hospital. We were going to enroll our daughter in whatever therapy we could. We handled both private and insurance-based work. Natalie wowed us with her dedication and improvement. She was proving her father right and the doctors wrong!! We had the chance to take Natalie to Kennedy Krieger Brain and Spinal Institute in Maryland for inpatient therapy the first year and outpatient therapy the next two years over the summer for the first three years of her recuperation. It was just what Natalie had been looking for. They pushed her to do things that we didn’t believe she was capable of at the time. They had her walking with a walker the first time we went – it blew our minds! We worked with her all the time, even when she wasn’t in treatment. Natalie’s body had to go through a lot of changes. There were good days and horrible days for her. We had to re-establish our family’s equilibrium and establish a new normal.
Natalie, our eleven-year-old daughter, was a joyful little girl. She enjoyed being outside with her pals and playing. Gymnastics was her passion. She was continually practicing whenever she had the opportunity. She had a chuckle that was contagious. She was always so vivacious. Although some of these things have changed, her spirit has not.
It felt like Christmas every day. With her, every day was a gift. We were grateful to have her among us despite the terrible events that had occurred. It could have turned out to be a lot worse for her. Natalie can now control the movement of her left leg. The right leg does not move independently; instead, it moves in tandem with the left leg. She has no pain and is unable to feel hot or cold. She is sensitive to touch. Natalie has made some wonderful friends who have supported her on her quest. Natalie continues to go to therapy once a week and walks around the house with a walker. Natalie is working on increasing her endurance. Natalie has been through a lot, but she is capable of doing anything everyone else can. She is currently studying to become a pediatric nurse and is currently learning to drive. She has a clear idea of what she wants to accomplish in her life. She is a self-sufficient individual. She has taken up adaptive tennis and enjoys it. She intends to achieve all of her objectives. Our family has gone through a lot of changes, but we’ve always remained positive and strong.”