Look up the word tough in the Merriam-Webster dictionary and there are nine definitions, several related to a person’s character. Two stand out, including “capable of enduring strain, hardship” and “characterized by uncompromising determination.”
For those, an easier definition would be to list the name Ethan Russell with a photo featuring one of his trademark smiles.
Ethan is a 12-year-old who plays four sports. He has a younger sister, Talia, who looks up to him. He is all energy, all the time. He is active at Pershing Middle School.
However, he is not a typical middle school boy. As mom Heather says, “He is one tough, little guy.”
In his 12-plus years of life, Ethan has had 20 surgeries, five additional heart surgeries and has suffered a heart attack. He has cerebral palsy and was recently diagnosed with Floating Harbor Syndrome. The U.S. National Library of Medicine notes only about 50 cases of the latter medical condition have been reported in medical literature.
“Because this is such a new diagnosis for us, and because it is such a rare and complex diagnosis, we don’t know anything about life longevity,” Heather said. “But after five heart surgeries we know every day is precious and meaningful and Ethan is a miracle. Every day is a blessing, so we really try to focus on every positive thing, every day. All these happy events – birthdays, Special Olympics and all these wonderful things.”
Usually, that wonderful thing is Ethan’s spirit.
“Special Olympics has been an amazing event for Ethan and the whole family. It has been a chance for Ethan to shine,” Heather said. “When he was small they said he would never walk. He started walking at 4-and-a-half years old. Now, to see him running, having fun, waving, and smiling with every step is priceless for him, and for our family to see.
“It is very emotional because he’s breaking down barriers, making strides and progressing constantly. Just seeing that he does everything with a smile and with so much happiness, I think, as a mother, it is inspiring. However, it is inspiring for so many people, who just see that with all of the challenges, he faces every day with so much heart and energy and spirit. He is so positive and happy, it is contagious.”
That contagious spirit was on display at Point Loma Nazarene University last Saturday during the Special Olympics Southern California San Diego Athletics Regional Games. He competed in the 100- and 50-yard runs, and the softball throw. He also started the day on the right foot, bringing in the Flame of Hope with San Diego Sheriff Deputy Maggie Collins.
“We thought about it (getting involved with Special Olympics) for many years, but he had so many surgeries and with cerebral palsy his stability hasn’t been the best,” Heather said. “We never really followed up with it until he was nine. We thought we would give it a shot and he has shined. It is something we will spend a lifetime doing because it is so wonderful.”
As long as Ethan is in Special Olympics, Team Ethan will be there in full force. Mom, dad (Shawn), aunts, cousins, friends, and sister Talia. They were loud and decked out in Team Ethan gear Saturday. They are not done yet.
Last weekend he competed for his community Special Olympics program, the Crawford Skybirds. However, it has been school programming that got him plugged in and he will compete again today (Friday, April 27) in the Pershing Spring School Games.
At Pershing Middle School he is in a program “where it is unified, where all the students learn and play together,” Heather said. The inclusion and team comradery he has with Pershing and the Crawford Skybirds has been instrumental for Ethan’s growth.
“I think it is the team. There is such a comradery with the team,” Heather said. “We have had such wonderful coaches, Sandy and Tony. It is an ability for him to individually shine.”
His shine is not just in sports. He has started a project called Plus One. Ethan, who is non-verbal, relies on sign language and he wants to teach those around him. There’s one catch: he wants that person to then teach someone else.
“Learn a sign, teach a sign,” Heather said.
Through his uncompromising determination, along with that award-winning spirit, Ethan is going to have a lot more members of Team Ethan.