June 6 is Transverse Myelitis Awareness Day, and one local man is striving to increase knowledge and understanding of this rare and debilitating neurological disorder throughout the month of June. Rohnert Park resident, Thomas Silewicz, has personal experience with the disease after his four-year-old granddaughter was diagnosed with it about six months ago.
“Six months ago our granddaughter Madi went from a being a high-energy four year old to being partially paralyzed overnight with a rare disorder called Transverse Myelitis,” says Thomas Silewicz, an active cyclist, runner and swimmer. “The weekend prior to this, Madi and I were running in the park – she ran and ran. My thought was, perhaps she will be an endurance athlete when she gets older. I had no idea that days later, not years, she would have to call on her reserves and endure a battle that is tougher than any Ironman event.”
The disease hit Madi practically overnight. One morning she said she couldn’t move, and when her parents tried to get her to stand on her feet, she collapsed. She went to the emergency room as the paralysis continued to progress and initially the ER staff were baffled. It took 36 hours before a diagnosis was finally given.
Transverse myelitis (TM) is an inflammation of the spinal cord. This neurological disorder often damages the insulating material covering nerve cell fibers and can interfere with messages the spinal cord nerves send throughout the body. While Madi and her parents may never know for sure how she contracted the disorder, and research is still being done on causes and cures, doctors estimate that about 50 percent of the time a viral infection precedes the onset of TM. The family was told at the time of diagnosis that one-third of TM patients never improve, one-third have some life-long paralysis and one-third make a full or almost full recovery.
“At her worst point Madi lost the ability to walk, use her hands and even sit up,” says Silewicz. “TM is an inflammation in the spinal column and the area of Madi’s was high – there was a very real risk that she would lose the ability to breathe. For five days and nights in the Peds ICU, my daughter and son in-law took turns lying next to Madi watching her little chest go up and down, hoping and praying that this life-giving process would continue…It was emotionally draining like you could not believe.”
Fortunately, Madi began steroid treatments shortly after diagnosis and began improving, first regaining the ability to sit up and later getting use of her legs and being able to stand up. She underwent occupational therapy for about six months and is now on her way to a full recovery.
“2020 has been a tough year,” says Silewicz. “This crushed all of us emotionally. The good news is that Madi is doing a lot better. She still has a little weakness on her left side and her coordination between her left side and right side is coming back but is still a bit lagging. But since she’s so young they have high hopes that she’ll be at 100 percent if not very close to it.”
Silewicz feels overwhelming gratitude for Madi’s recovery and wants others who are dealing with this illness to know that they are not alone. The color associated with TM awareness is blue and Silewicz is organizing bike rides for the next two Saturdays in June (June 20 and 27). He is asking other interested cyclists to join him in wearing blue and participating in an (approximately) 50-mile bike ride on those Saturdays to focus awareness on this little-known disorder. Anyone interested can text Silewicz at 707-328-5125 for route details. Another way to help is to make a donation to the Siegel Rare Neuroimmune Association (SRNA), which aims to fight TM and other rare disorders: https://secure.everyaction.com/P2P/l88nxslIaUK_BdR2QYiq5w2/qcbxzqh7EeqbBQAVXQOedA2.
“There are still many who are fighting TM,” says Silewicz. “I know the pain and shock these families are feeling.”