The Value of Community and Connection through Sports and NMD

Darci Garcia is 44 years old. She is originally from Iowa and has been living in suburban Houston, Texas for the last 17 years. Darci is a wife, mother, retired special education teacher, and former collegiate soccer player. She has been living with amyotrophic lateral sclerosis (ALS) since 2018. Darci enjoys music, Astros baseball, watching movies, and writing.

Darci and Neil at Neil’s power soccer game, 2015

In 2014, I was starting my seventh year as an Adapted Physical Education (APE) teacher when I met a bright 6th grade student named Neilesh “Neil”, who used a power wheelchair. In my years of teaching APE and coaching Special Olympics, I coached or taught students and athletes with Autism, intellectual disabilities, and other  orthopedic/health impairments, but Neil was the first student of mine living with Duchenne muscular dystrophy (DMD).

Meeting Neil was also my first introduction to the MDA. Neil attended several events hosted by MDA over the years, including the holiday party, the dance for young adults, and his very favorite: MDA summer camp. He loved having a week with peers and without parents, having nothing but fun; it was the highlight of his summer.

Neil and friend having fun in Ms. Garcia’s APE class, 2016

The summer prior to the 2014-2015 school year, I was introduced to “power soccer” at a teachers’ training. I played soccer in college, and was still playing on an adult league at that time, so this version of soccer, played in power wheelchairs, was very intriguing to me. I asked Neil if he was interested in playing and we researched if there was a local team he could join. The next day he told me, “My dad signed me up for the Houston Fireballs!” Power soccer became a passion of Neil’s, and he was quite good, becoming Captain and winning some MVP and Top Scorer awards along the way! I watched his team play a few times and I got to know his parents, becoming friends with his mother Nelini.

By Neil’s 8th grade year, he chose to participate in athletics and really enjoyed helping with the football team. One day during class I asked him, “Would you like to get in a game and go for a touchdown?” His eyes lit up. “Yes!” I spoke with his coaches, including Chris Ford, and they jumped on board and ran with the idea. Arranging Neil’s touchdown play with the opposing team was not an issue at all; their coaches were also excitedly on board.

Neil, 2020

In one of my very favorite moments as an APE teacher, Neil, all suited up in jersey and pads, took his place in the formation, was handed off the football, and drove his wheelchair full speed into the endzone for a touchdown. Coaches, teammates, opponents, and fans all erupted in cheers, and probably a few tears. It was an amazing moment, and a testament to Neil’s competitive and joyous spirit, as well as an epic moment for inclusion. Here’s the video of the touchdown that I posted to Facebook: https://www.facebook.com/share/v/b5te4sbqmcJPwB5c/?mibextid=KsPBc6

Neil moved on to high school and Nelini and I stayed in touch. I reached out to her when I received my ALS diagnosis in May of 2018. I had muscle wasting and dexterity troubles in my right hand. By December of 2019, I retired from teaching because my body was getting weaker. Near the end of 2021, my ALS disease progression led me to become a full-time wheelchair user.

In another layer of coincidence, in 2020 Neil’s former football coach, Chris Ford, was also diagnosed with ALS. A physical education teacher and athletic coach for 25 years and a former NFL player, Chris’ symptoms also started in his hand. Chris recently began requiring his wheelchair more regularly. We have become friends through this shared journey. When we get together, Neil‘s name almost always comes up. Chris said of Neil, “Neil made such an impression on me in a positive way. Just to see his smile every day and his love for life is very inspiring in my journey with ALS.”

Neil passed away in 2021, at age 17.  When speaking with his mother Nelini recently, she told me Neil seldom complained, and if he grieved any losses that DMD took from him, he never showed it. His biggest frustration was that DMD kept him from his dream of joining the US Army. Neil’s family continues to be a support and blessing to my family and me, even selling us their wheelchair accessible van at a fantastic price.

I asked Nelini if she’d share some insight on how she felt Coach Ford and I had impacted Neil, and she wrote:

Darci and Chris, Lou Gerhig Day Astros watch party, 2021.

“They both showed him possibilities rather than limitations! Darci made PE fun for him. She executed well thought out activities and obstacle courses that challenged his driving skills!  By also including his best friend(s), it helped Neil to feel included rather than excluded. On days when Neil had APE class, he would rave about what he did as soon as he came home. Darci took the extra step to send videos to me, which was priceless! It felt so good to see how much fun he was having and it was those moments that really helped me to power through when I was feeling down. She introduced him to the Houston Fireballs and power soccer became a passion for Neil. It allowed him to play a competitive sport independently and be a part of a team.  It brought out his competitive nature and gave him something to work toward and to look forward to every weekend.  He developed his skills and was well on his way to try out for Team USA!  We are forever grateful to her for impacting his life in a positive manner.

Coach Ford made it possible for Neil to be part of the team and feel included. He was thrilled in his role as manager of the football team. It filled him with pride and purpose. It also served as a special bonding time with his dad. Now, they both had a sport in common they could talk about. They would talk football and go over plays, evaluate the players, and suggest improvements. Even if it was just between the two of them, it was still valuable and helped Neil to transfer his skills and excel with the Houston Fireballs. Because of Coach Ford’s leadership, Neil was influenced on how to be a leader, a coach, and a team player. He won many games, tournaments, and awards, including MVP two years in a row!”

Darci Garcia

I think of Neil often as I live my life as a person with a neuromuscular disease and a power wheelchair user. I especially think of him when I feel anxious or discouraged. Neil enjoyed life and exuded joy. He never hid from the world or backed down from a challenge. Now I understand how difficult those challenges were for him, which makes me even more in awe of him. Neil was very special, and my life is better for knowing him.

To follow more of my ALS story, you can check out Darci’s Defenders on Facebook at https://www.facebook.com/DarcisDefenders