Time is of the essence when it comes to rare neuroimmune disorders and the time to get awareness out is now. I know this because my 2 ½ year old son has Acute Flaccid Myelitis (AFM) which is a subtype of Transverse Myelitis.
Little did I know the clock was ticking on the morning of October 3, 2014. That morning felt like any other morning. I got up and got my baby out of his crib and nursed him. After feeding him I went to sit him up on the bed and he fell backwards. I did it again and back he went. I looked him over and he wasn’t moving from the waist down. We proceeded to our nearest emergency room where we were immediately transferred to Boston Children’s Hospital.
As the day proceeded on you could see the paralysis traveling up his tiny body. It was critical that a diagnosis be made in hopes of not only saving his life but his quality of life. The physicians ran a battery of tests in hopes of beating the clock to receive a final diagnosis. In the process it was concluded that Noah had either Guillain-Barre Syndrome (GBS) or a type of myelitis. Once the test results were in, he was diagnosed with Acute Flaccid Myelitis (AFM). Initial diagnosis was overwhelming and terrifying because this is a rare disorder. There is so much more research that needs to be done on rare neuroimmune disorders. There is no cure and the frontline medications were not guaranteed to stop the paralysis or reverse the damage. We were riding on prayers and hope. After the medications were administrated only time would tell if Noah’s paralysis would reverse or improve. If recovery was possible it would take time and lots of it.
We have come a long way since October 3, 2014. I am happy to report Noah is walking with a gait trainer and has a very hopeful future in front of him. This was made possible by the quick actions of physicians who were educated (which is rare!) and knew about this rare disorder and their quick thinking. Most of all it’s possible because Noah works each and every day to gain back what AFM tried to take from him. He is the most determined person I’ve ever met. On top of the four in-home physical therapy sessions, he also does aquatic, hippo (horse) and music therapy totaling seven sessions of physical therapy in five days! He amazes everyone day in and day out. He is our hope and our inspiration. As his parents we join him in his fight to take back AFM. We have made it our mission to give back to the rare neuroimmune disorder community in honor of our son.
Elisa Holt
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Larry