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Fight rare neuro-immune disorders. Together.
Our lives were forever changed on April 1, 2013. I dropped my perfectly healthy, nine-month-old daughter, Rilynn, off at daycare that morning before heading to work. At 4:45 pm, I received a phone call from our daycare provider telling me that something was wrong. Rilynn had woken from her nap around 4:00, she drank a bottle and had a snack. And then something changed. Her eyes were glassy and she couldn’t put any weight on her legs. I left work, not worried or panicked, and told my boss that I would see her in the morning. I had no idea as I walked out the door that I wouldn’t set foot in the building for another 56 days.
When I picked Rilynn up, I immediately knew something was wrong. She screamed in pain as I buckled her into her car seat. I called my husband, Danny, from the car in tears, telling him we needed to get Rilynn to the hospital. We took her to our local hospital in rural Salida, Colorado, where blood tests, CAT scans, X-rays and urinalysis were performed before they sent us home, telling us that she was just lethargic from not feeling well. In reality, we were walking out the door with a daughter that was paralyzed from the neck down. When she could no longer lift her head to nurse, we loaded her up in the car and drove her to Children’s Hospital in Colorado Springs. It was there that we first heard the words, Transverse Myelitis.
With the diagnosis brought progress. We began the first rounds of steroids and IVIG treatments. With the help of Sandy Siegel and the TMA, we were transferred to Children’s Hospital in Denver to begin five plasmapheresis treatments and entered their inpatient rehabilitation program. Rilynn slowly began to regain movement, first in her arms and hands and then very slowly in her legs. We left the hospital on May 17, 2013 with an 11-month old daughter who was just relearning how to sit up and roll from her back to her stomach.
Today, Rilynn can walk with the help of a reverse walker or forearm crutches. She has regained motion in all parts of her body. She sees her physical therapist three days a week and receives occupational therapy twice per month. She can stand on her own for a period of time and has even taken some unassisted steps by herself. At four years old, she is finally figuring out potty training, and, while it hasn’t been easy, she has more good days than bad days. She works harder than any kid I know, and she does it all with a smile on her face.
We sometimes say that when it comes to TM, we drew the longer of the short straws. Rilynn attends preschool five days a week and is surrounded by an amazing group of friends who are some of her biggest fans. She is incredibly smart with a vocabulary that would rival most kids twice her age. She has recently started asking questions about why she needs help to walk and wants us to tell her the story of when she got sick. We are open and honest with her and are working hard to give her the tools she needs to answer the questions she gets asked by curious kids and adults about “what happened to her.”
Both Danny and I would do anything to change this for Rilynn – let one of us deal with TM, not her. But Rilynn doesn’t let it stop her. There’s nothing she can’t or won’t do. Our family is closer because we know how quickly life can change. We appreciate the little things. We have met some amazing people and experienced some incredible generosity throughout this journey. And while we would do anything to change this for Rilynn, this is our life, this is our hope. And we embrace it.
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