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Fight rare neuro-immune disorders. Together.
Transverse Myelitis has been a part of our everyday lives since June 2, 2015. Our daughter Maggie Dawn was diagnosed with TM just a few weeks after her 1st birthday. The onset of her symptoms started with vomiting, crying, lack of appetite, lack of thirst, lethargy, then becoming severely dehydrated, then the loss of balance and paralysis beginning with her legs and spreading up her torso and arms. All of this happened within 3 days. Maggie was finally admitted to the hospital on a Wednesday night when we wouldn’t settle for a diagnosis of severe dehydration. We kept insisting and wanting answers for the lack of movement in her limbs. By Friday night, a pediatric neurologist was called in to evaluate our daughter and find answers to the paralysis that had set in.
Everything after Maggie’s hospital admission was a whirlwind to say the least. The team on Maggie’s case was mostly resident doctors who had no idea what Transverse Myelitis was. The Pediatric Medical Director of the hospital, Dr. Hemmady, took the time to get to know Maggie and realized this was nowhere near what Maggie could previously do physically. Dr. Hemmady called in a neurologist to evaluate Maggie as soon as possible. Luckily, her neurologist, Dr. Narayanan had seen a few cases of Transverse Myelitis and knew what it was and how to immediately treat it.
Treatment for TM began immediately after her MRI and spinal tap results showed extended demyelination of her spinal cord from the cerebrospinal junction to T-10. Treatment consisted of high dose methylprednisolone and IVIG. Maggie spent about 3 days in the ICU during the initial treatment for TM and a total of 11 days in the hospital.
There were no answers after her diagnosis. This was very frustrating. Would she walk again? Would she crawl? Would she even be able to sit up on her own? No answers could be given, it was all a wait and see what she gains back over time.
Our lives turned upside down having no answers to questions we desperately wanted answers to. We remain positive in our family and have a “never give up hope” attitude. Our lives are one day at a time now. Looking for the smallest of improvements, which are the biggest steps to improvement and recovery.
All of Maggie’s doctors said that children are resilient and their bodies are still developing and growing so hopefully she could make a pretty good recovery. We immediately jumped into looking at therapies to help our Maggie get back to 100%. Maggie began physical therapy in the hospital and also continued at home. She has also completed 16 sessions of hyperbaric oxygen chamber treatments at a private facility along with weekly acupuncture treatments to help with nerve pain and muscle and nerve stimulation. She is also on a multitude of vitamins and natural supplements. We have weekly doctor appointments, sometimes as many as 3-4 times a week. Our doctors and therapists have come to feel like family because we see them so much. A year and half after her diagnosis she continues PT and acupuncture treatments as well as quarterly follow-ups with her naturopathic doctor and regular pediatrician.
Thankfully, Maggie has done significantly well in her recovery and she is able to walk again. She still suffers from nerve pain in her legs and feet with considerable sensitivity to the smallest of bumps and bruises. When she has a cold it throws her little body for a loop and she also has balance issues when she has fever. Maggie can walk and run but with an abnormal gait. To those who don’t know her diagnosis, they may not notice her abnormality but this just makes her unique.
Medical professionals need to be aware of the symptoms of TM and other rare neuro-immune disorders so they can recognize what it is and stop it from progressing. We had a great team of doctors on Maggie’s side and they didn’t give up while trying to diagnose her and they listened to our concerns. There is no cure for transverse myelitis and it can strike anyone, anywhere, from any background and at any age. Maggie was only 1-year-old at her diagnosis and was 1 in 4 million. Raising awareness in the medical community is very important so patients don’t get misdiagnosed and symptoms go untreated. We are always hoping for a cure and answers to the cause. The only way for a cure is through continued research.
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