For Libby Castillo, her older sister, Kathy – or Kat, was always the one taking charge. Even though Kat was 11 years older, she and Libby were close throughout their lives. Kat had four children, one girl and three boys, who are all adults now. Even though Kat passed in April of 2021, her family continues to Walk to Defeat ALS in her memory.
The Diagnosis Process
The first sign of ALS that Kat experienced was numbness in her left hand. She soon began to lose functionality in the hand, so she and her husband began meeting with doctors to determine what was going on. After multiple visits, eventually they landed on a diagnosis of ALS. Kat gathered her family together to share the news of her diagnosis on National Siblings Day. Initially, some family members had no idea what ALS was. One of Kat’s sons immediately began doing research.
“He and I were the ones that sat down together and got on our phones immediately and started looking it up… we saw the lifespan of people who have ALS and knew this was not a good thing,” Libby said.
After Kathy had broken the news to her family, they got connected with the ALS Association Texas Chapter and began going to support groups and clinics together.
“There’s this resource out there of these support groups… they are an excellent resource for people who are going through this, especially for family members. We need that connection with other people to work through our emotions together,” Libby said about becoming involved in the ALS community, adding that the support groups were especially helpful for her mother who had to watch her daughter go through this disease. Though Libby initially went to the groups to support her mother, she soon found herself benefitting from the groups as well, “It was interesting to meet other people and let people know that we understood what they were going through as well.”
Joining the Walk
Kat had always been a go-getter, and that didn’t stop even when she was diagnosed with ALS.
“Kat would go after what she wanted; if someone didn’t give it to her, she’d find a way to get it herself. When she was diagnosed, she heard about the Walk, so when she was still able to walk, she gathered everybody up – her friends and our family—and we did our first walk at Woodlawn Lake in San Antonio.”
The team name, Team BobKat, is a combination of Kat’s name, and her husband’s name, Bob. They have been active in every walk since Kat was diagnosed and hope to continue carrying the torch in honor of Kat and to help others who are dealing with their own ALS diagnosis. Libby has taken on the role of team captain since her sister’s passing and hopes to make the walk as successful as possible in Kat’s memory.
“We are a direct example of how these funds help people. We were able to use the resources that the ALS Association provided,” Libby said, “We walk because we as a collective want to raise money for this association because we know the good that can come out of the funds that are raised.”
Helping Others Along the Way
Libby knows how hard it can be to deal with the news when a loved one is diagnosed with ALS. She urges others to be empathetic and gracious with both themselves and their loved ones and encourages people to reach out and ask for help.
“For the people with ALS and the caregivers – take the help… there’s help not only from friends and family that want to give it, but also from the Association as well.”
Even when Kat lost her ability to speak, Libby was always amazed with her sister’s tenacity. Kat continued to organize her family’s walk and even planned an entire wedding vow renewal ceremony for her and her husband using her eye-gaze machine.
“Despite everything that happened to her, I’m just amazed how strong she was mentally and emotionally. She has this big family… she had a very strong mind and was open to accepting the help and using the resources that were given to her to live her best life despite the diagnosis.”
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Ron served in the U.S. Army from 1974 to 1977. “Some people went to college. I had 3 years of ROTC in high school and joined the Army right out of school,” he shared. Ron’s MOS (Military Occupational Specialty) was being a Voice Radio Operator with the 39th Signal Battalion, 128th Signal Company.
This group grew tremendously with more students and community mentors getting involved each year. Later, he helped found a Girls of Greatness club for young women. As Trace continued to impact his community in Weatherford ISD, he was promoted to Assistant Principal at Weatherford High School.
The Long Road to Diagnosis
We Can Make a Difference
All of us at one time or another have felt REGRET. Feelings of regret can stem from looking back on past behaviors and decisions and believing that a better outcome may have occurred if a different choice was made. Maybe you have heard this also referred to as “hindsight bias”?
Like most everything in our life, regret-free living is a journey; it takes awareness, curiosity, practice… and a really BIG sense of humor!
From those living with ALS to their caregivers, to their children, grandchildren, and everyone in between, every member of every ALS family needs a hand to hold as they walk along the ALS journey.
ALS Texas is here to support your emotional needs on the ALS journey, but it all starts with you. Those living with ALS and caring for those living with ALS have the most wisdom to pass to others who will experience this disease. Take it from ALS family, Mike & Mary Busch, who shared, “When you get further into the journey, you realize you have valuable experience that you can share with others.”
Rupesh Kotiya grew up in North Carolina and moved to Dallas, Texas fifteen years ago after spending some time in New York. Siobhan is originally from the UK, and after dating long-distance for a while, she moved to Dallas the same year. Today, they are married with two wonderful boys, Ronan who is 10 and Keaton who is 8.
In that moment, everything changed for the Kotiya family. Their sons were only 4 and 2 years old at the time. Rupesh still had a successful career as the VP of Sales in North Texas and Oklahoma for Mainstay Investments, a division of New York Life. Nothing would be the same, but they would not let ALS get the best of them.
Despite the challenges of a new diagnosis, Rupesh continued to work full time for two years. He had an impressive career as the VP of Sales, and it was only after it became unsafe for him to drive that he retired.
By the time 2020 came around, Rupesh felt his symptoms more in his arms, legs, and hands. It became more difficult for him to walk without a walker and now he uses a motorized wheelchair. In that same year, his doctor recommended that he have a trach placed and he is now on a ventilator 24/7. Even still, Rupesh doesn’t let that stop him from making memories with his family.
The Kotiya family previously supported other walk events, but after connecting with ALS Texas, they decided to support the organization. “Even though the prognosis is never good and there is no cure, maybe we can be the ones to help find the cure,” Siobhan shared. They joined the Texas Walk to Defeat ALS under the team name, Friends of Rupesh.
Siobhan hopes that Rupesh’s legacy will have a lasting impact on their two children. Already, their oldest son Ronan, has been inspired by his father. He wrote a book about his father’s ALS journey. “The book is written from the perspective of a 10 year old and aims to provide hope that you can still do many things, e.g., go on holiday, attend parties and most importantly, enjoy life with your loved ones”. What started out as a summer project turned into a fundraiser. Ronan has sold over 600 books and is close to raising almost $7,500 to benefit Texans with ALS.
Ronan isn’t the only one inspired by Rupesh to support the ALS Texas mission. Six years ago, one of Rupesh’s close friends created the “Friends of Rupesh” golf tournament to raise funds for the ALS Texas mission. This year marks the sixth anniversary of this event to honor Rupesh.
She noted how ALS Texas supports her family with resources like a shower chair. She also discussed how the North Carolina chapter is equipping them with a power wheelchair to use while they travel to the state where Rupesh grew up.
You can support Texans with ALS like Rupesh this year at the Texas Walk to Defeat ALS! With both virtual and in-person options, you can walk YOUR WAY! Register in the city nearest to you and walk wherever you want on Saturday, October 30. Learn more at alstexas.org/walk. Together we will create a world without ALS!