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Fight rare neuro-immune disorders. Together.
I remember the day like it was yesterday. It was November 28, 2006 when our daughter, Sydney, was diagnosed with Transverse Myelitis at the age of six. I can still remember that day as she turned around and gave me a big smile and wave as I dropped her off at school. She was just a few months into her kindergarten year. She was at school for about 1.5 hours when the school nurse called and was concerned about Sydney. I was lucky that I was at home and was able to be at school within minutes. The teacher explained that the class was dancing and moving around the room just before sitting down and that she hadn’t noticed anything wrong with Sydney at that time. However, they were at their seats for no more than 10 minutes when Sydney went to stand back up to hand in her paper, she was not able to support her weight. She could move her legs but said they were “wobbly.” I asked her if she was in any pain and she said no. Confused but concerned because she would not stand, I drove her straight to her pediatrician’s office.
When we arrived, I noticed that she wasn’t moving her legs at all anymore. Panic started to sink in, I knew something wasn’t right. She was quickly examined by several doctors and Guillain-Barré Syndrome was mentioned. I was told by her pediatrician that I was to take her directly to Children’s Mercy Hospital in Kansas City. They had spoken to the physicians at the hospital and she was to be admitted. Sydney was not complaining of being in pain. I was very confused and scared of the unknown. When we arrived at the hospital she had no movement waist down and I could tell it was creeping further up her body fast. Approximately one hour had passed now since the onset. This is when the whirlwind of tests started and many physicians and nurses started asking questions.
Ultimately, it was the MRI that showed inflammation at the T10 level. At this time, it was about 10:00 p.m.; approximately 12 hours from onset and we were told she had Transverse Myelitis. They immediately started her on high dose steroids to reduce the inflammation. I remember understanding what the doctor was saying but not really comprehending the seriousness of what was happening to Sydney. Here’s where you let go and pray. I couldn’t fix it and I so wanted to make my little girl better.
For four days, I just sat and stared at her legs. Then, finally her toes started to move. She was an inpatient for one month and then received intense outpatient therapy for several months. Although we are truly grateful for how far Sydney has come, it hasn’t been an easy road adjusting to her new lifestyle. Sydney walks with an abnormal gait. She suffers from fatigue, pain, spasticity, muscle atrophy and has residual bowel and bladder issues that are controlled somewhat through medication. A year ago, Sydney was hospitalized for Osteomyelitis in two of her vertebrates and surrounding tissue. Recently, she had a surgery on her left foot to correct some of the damage from TM; it did not go as planned. Nevertheless, Sydney continues to remain positive and determined; never giving up hope. I think I’ve learned more from this sweet girl about the true meaning of life than I could have in a lifetime. She is amazing. We hope and pray for a cure for these rare neuro-immune disorders. I am so thankful we can share her story to spread the word and also for her to know she is not alone.
I could never imagine a normal day at school could go so wrong. It all started when I noticed something was a little off as I reached down to grab my pencil that I had dropped. I couldn’t get back up, so I used the table as support and used all my strength to pull myself into my chair. I tried to walk to my teacher but instead, I fell to the ground and was unable to stand. I couldn’t feel anything below my waist; it felt wobbly. The rest of the day was sort of a blur. I remember bits and pieces of my time in the hospital but, I will always remember that day as the day my life changed forever. I still have problems with walking and keeping up with my friends but I won’t let that stop me from missing out on life’s little moments. After my diagnosis I’ve tried my best to fit in. I’ve tried dance, played soccer and basketball, horseback riding, swim team, softball, and water polo. While these were all fun, it was too difficult for me to keep up. I’ve always wanted to do the impossible with my condition and to show people I was unstoppable. Transverse Myelitis will NOT hold me back from achieving my goals. I want to conquer TM and hope for a cure someday. My heart goes out to everyone that has suffered through this horrible neuro-immune disorder. I hope to inspire many people to not give up and always keep trying!!
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