Raising Awareness of Myasthenia Gravis with MG Gear
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Our MG Story: The Stehlik Sisters Give Back in Memory of Their Pops

Our MG Story: The Stehlik Sisters Give Back in Memory of Their Pops

By Kate Stober

The way sisters Alexandra Hite and Amanda Coots describe it, Tom Stehlik was always destined to join the family, and his future health issues and myasthenia gravis diagnosis brought them even closer – helping them become a force for rare disease awareness. 


A widower, Tom met the sisters’ mom on a blind date in March 2015. For Tom, it was love at first sight.


Alexandra describes the meeting:


“Tom told me, ‘The lilacs and orange blossoms were in bloom, and the breeze blew across my face. Then your mom came through the back door, and I said to myself, I’m going to marry that woman!’”


They were married on his birthday, June 4, 2015, just three months later.


Tom was elated that his new bride had children and grandchildren.


“He was the BEST pops and grandpops around. He loved us kids, but man did he love my mom. He fit into our family as if he was always a part of it,” Alexandra shares.


Alexandra and her pops
Alexandra and her pops on her wedding day

Tom grew up in South Dakota, one of ten children on a small farm. Living with an abusive father showed him everything he didn’t want to be. He left home to join the Navy at age 17 and served 21 years.


But his biggest battle lay ahead of him.


Five years after his wedding, Tom found out he had stage 4 metastatic renal cell carcinoma. While he recovered and was declared cancer-free, eight months later doctors discovered a cancerous tumor on his cerebellum. They decided to treat the cancer with immunotherapy.


Unfortunately, Tom experienced a very rare side effect. He was part of a small percentage of people - less than 1% in one study - who are diagnosed with myasthenia gravis subsequent to their treatment.


A day after his second infusion, Tom couldn’t open his eyes, swallow, or breathe. He was taken to the ICU, where a doctor diagnosed him with MG.


Standard MG treatments didn’t resolve Tom’s symptoms, and he couldn’t receive treatment for his cancer while his health was unstable.


“His frustrations grew daily, mom’s heart broke more every day, and he wasn’t getting any better at all,” says Alexandra. “We spent more time in the ICU than at home.”


After four heartbreaking months, Tom lost his battle with MG and cancer on January 22, 2022.


“Before Pops passed, he made us promise that we would do something to celebrate his life,” says Alexandra. “So, we decided to honor him by raising awareness about myasthenia gravis.”

myasthenia gravis awareness decal ribbons


That first June after his death, to align with Tom’s birthday and his and their mother’s wedding anniversary, Alexandra and Amanda decided to give away MG awareness decals.


“We thought we’d get a few takers, and we’d move on,” Alexandra shares. “That's not what happened at all!!! We GOT AN OVERWHELMING response!! We sent out over 100 in the first round!


“We had to do something to make it easier on us, while also doing more for the MG warrior community, so Stehlik Sisters Against Myasthenia Gravis was born!”


Stehlik Sisters Against Myasthenia Gravis is a Facebook page and business dedicated to raising awareness about myasthenia gravis. The sisters sell MG merchandise like decals, koozies, t-shirts, and cups. On the 22nd of every month, they give away 50 teal MG awareness ribbon decals. 


“It is our goal to create awareness and conversation that may someday lead to a cure. It worked for the red ribbon for AIDS awareness!”


They care passionately about supporting those living with MG, especially “some of the smallest warriors,” says Alexandra. They’ve sent care packages to children as young as three who are battling the disease.sparkly teal cup and teal poster


“We started this decal giveaway and then the Facebook page to not only celebrate Pops' life but also the many others fighting this awful diagnosis. We know that he is proud of the work we are doing. We hope for better treatments and a cure. It starts with awareness and education, and we hope we are headed in the right direction!”


Follow Stehlik Sisters against Myasthenia Gravis on Facebook or email them with SSAMG in the subject line to place an order. For MG Awareness Month, the sisters are also giving away a special MG care package. Stay tuned for the next decal give away on June 22. This month the sisters are giving away DOUBLE the decals! (The giveaway is for the first 50 MG Warriors who send a Facebook message with their shipping info to the sisters on June 22 - see their Facebook page for details.) 

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