For Priscilla Caballero, her mother, Maggie, had always been a source of strength. Maggie was a single mother and raised her 4 children along with the help of their grandmother. Now grown up, Priscilla is a third-generation restaurant owner, and she uses the restaurants as platforms to help raise awareness and bring people together in the fight against ALS.
The Long Road to Diagnosis
Maggie and her family first started noticing signs of ALS in the summer of 2018 when Maggie was frequently tripping. The family visited a podiatrist who told them that Maggie had a sprained ankle, but when months passed, and Maggie’s mobility got worse, they realized they needed to see a neurosurgeon.
“That appointment was eye opening and concerning because he sat there and told us he had never seen anything like that. He couldn’t explain what was causing that lack of mobility in her foot,” Priscilla said about the visit to the doctor.
Maggie was told to see a neurologist, but with the holidays, they were not able to get an appointment until the end of December. By Halloween, Maggie was unable to move her leg all the way up to her hip, and shortly before Thanksgiving, the family became so concerned about her condition that they took Maggie to North Methodist hospital where she stayed for three days. A nurse there told Priscilla “if it was my mom, I would take her straight to University Hospital,” stating that they have more equipment there to help get answers.
Priscilla and her family did just that and took her mother straight from one hospital to the next. After a long 48-hour wait, the family was finally able to get a room on the neurology floor. As the tests and treatments continued, it became more and more clear that Maggie most likely had ALS.
“It was shocking because the first thing they do is hand you a paper that says terminal. The more you researched it, the more devastating it was.” Priscilla said, “Our only hope was maybe they’re wrong. Maybe it’s something else. But when we went to that first appointment, and the doctor told us it was ALS, and that there was no doubt, it was really hard to accept.”
A Whole New World
After the diagnosis was confirmed, Priscilla and her family got in contact with the ALS Association of Texas.
“Even in that short journey, we went to the ALS Association of Texas meetings which were so life-changing, because from the first time we went, she got to see that she wasn’t alone. We got to meet some incredible people that not only helped her as the patient, but also helped us as the caregivers because we were in a whole new world. We had to learn how to clean feeding tubes, how to rotate in bed.”
Priscilla and her family were able to keep her mother at home, and even though it was hard to see her decline, Priscilla says it was a good opportunity for the family to get every moment they could with Maggie.
ALS Texas continued to help Priscilla, Maggie, and their family throughout the journey by providing equipment, information, and support.
“The ALS Association of Texas lent us the eye gaze technology. And I’m so grateful for that because in her last weeks, those were the only way we communicated with her. Her last words were the words that computer read off to us, and that’s incredible”
The 2019 Walk to Defeat ALS was the family’s first walk. Maggie chose the name “Wind Warriors” for their team because “she always liked angels, wings, and things like that, so we thought it’d be great.” The team wore wings to the walk and even put wings on the back of Maggie’s wheelchair for the event.
“We put wings on the back of her wheelchair; for us it reminds us that she flies because when she was in that chair, she got mobility. She got wind.”
Priscilla’s Family used their restaurants as a platform to kick-start their fundraising. They sold t-shirts, held their own ice bucket challenges, and even held a special fundraising dinner. Together, they raised thousands of dollars to support Maggie and other Texans with ALS.
“It was nice to see so many people come together for that cause,” Priscilla said.
Maggie passed away in March of 2020, but her family continues to walk so they can support other families affected by ALS.
“It’s important to us because we know so little about this diagnosis and because no other family should have to suffer this way. I feel that awareness and knowledge need to be brought out in the medical industry. There were times that we got hospitalized and there were nurses and doctors who had no idea what ALS was.
Maggie’s influence continues to live on with her family; she had wanted nothing more than to have a granddaughter, and Priscilla found out that her new baby was a girl on the one-year anniversary of Maggie’s passing. She considers this a blessing and has named her daughter Maggie after her mother. She is glad that she was able to enjoy her mother’s final moments with her and encourages others to enjoy the time they have to spend with their loved ones with ALS.
“Although it’s an incredibly devastating diagnosis, try to look at it in some positive way and cherish every moment. I think the only good things I can say about the diagnosis was I could’ve lost my mom to a heart attack or an aneurysm – something where I never would’ve had time to say my goodbyes. We got 14 months to cherish every moment with her.”