Siobhan Kotiya describes her husband Rupesh as a people person who is very outgoing. His personality aided him in making many great friends over the course of his lifetime. Now that he’s living with ALS, the Kotiya family and Friends of Rupesh are incredible advocates for Texans living with ALS.
An Unexpected Diagnosis
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.
Rupesh first noticed symptoms in his shoulders in 2013. He could not make his normal shots in basketball and it became difficult to do simple tasks. Concerned that something was wrong, Siobhan and Rupesh started to meet with therapists and specialists. Through a gradual process of elimination and second opinions, they unfortunately received an official ALS diagnosis in October 2014.
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.
“It was that decision around fight or flight, and we just decided we were going to fight it. We were going to try and do everything possible,” Siobhan shared.
Overcoming the Challenges of ALS
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.
Daily tasks became difficult for Rupesh as his ALS progressed, such as showering and getting dressed. Their family searched for assistive options and they soon connected with the ALS Association of Texas. Rupesh was provided a shower chair from the Equipment Loan Program. From there, the Kotiya family continued to grow their relationship with the chapter and now they are passionate about supporting the ALS Texas Mission.
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.
Friends of Rupesh and the Fight Against ALS
Siobhan describes her husband Rupesh as a people person who is very outgoing. Throughout his life, he has made many friends who are now eager to support his ALS journey.
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.
“This provided us with the opportunity to support an organization that is not just focused on funding research and finding a cure but also supporting families that are going through it… They provide future hope as well as the day to day support that you need.” Siobhan shared.
Last year, during the pandemic, their goal was to raise only $750 – $1,000. However, by the end of the Walk, they had raised over $14,000 to support the ALS Texas mission. “Everyone just kept giving and giving!” Siobhan shared.
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.
These are just a few of the ways that the Kotiya family and Friends of Rupesh have rallied against the fight against ALS. In the last several years, they have raised over $35,000 to support the ALS Texas mission. Their story is a true testament to the power of our ALS community. Those living with ALS and their loved ones are determined to end this disease, and ALS Texas is here to lead the charge.
Why Should You Support ALS Texas?
When asked why others should join the Walk to Defeat ALS, Siobhan answered with confidence. “We are a family that’s going through this every single day and dealing with the challenges that come with it.” She continued, “Having that ongoing support that makes a difference to your life is so important as opposed to just waiting for a cure that unfortunately many won’t see in their lifetime.”
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.
When you join the Walk to Defeat ALS, you not only support research for a cure, but also crucial local care programs. Most importantly, it gives us the opportunity to honor and celebrate Texans with ALS and their families.
Although everyone’s journey is different, we all have one common goal and that it is to rid the world of this horrid disease and to make those who are diagnosed as happy and comfortable as possible.
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!
