PHOENIX — It started with one email from a 16-year-old girl determined to fight for the person she loves most.
“He is my younger brother, and he’s 8 years old,” Sophia Tckachenko tells ABC15. “He’s truly, like, my favorite person on the whole planet.”
Sophia Tckachenko is a junior at Paradise Valley High School, where she is already working toward a future in science and medicine through the school’s CREST program.
Inside the bioscience lab, she is gaining hands-on experience in science and research.
But the biggest reason behind her work is her younger brother who is living with Duchenne muscular dystrophy, a rare genetic disease that causes the body’s muscles to become progressively weaker. Duchenne can eventually affect a person’s mobility, heart and ability to breathe. There is currently no cure.
“He just makes me laugh, like, all the time,” Sophia said. “Just spending every day with him is amazing. And it would break my heart seeing him get into a wheelchair, which I know is soon.”
According to the Centers for Disease Control and Prevention, symptoms of Duchenne muscular dystrophy typically begin before the age of 5. The disease primarily affects boys and can weaken muscles throughout the body.
Sophia tells ABC15, the physical effects of Duchenne are only part of what families experience.
“It’s a huge impact mentally and physically for a person because of the grief that comes with it,” she said.
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Instead of sitting back and watching the disease change her brother’s life, Sophia decided to do something.
She began reaching out to local leaders with a request: recognize Sept. 7 as Duchenne Awareness Day.
“I wanted to speak for the Duchenne community because these people face these battles every single day,” Sophia said. “I wanted to make sure that they’re being seen, they’re being heard.”
Sophia initially hoped to secure a proclamation in Paradise Valley.
Her campaign eventually reached Gov. Katie Hobbs’ office, leading to statewide recognition.
With her brother by her side, Sophia stood inside the governor’s office as Arizona proclaimed Sept. 7 as Duchenne Awareness Day.
“When I saw the email, I was so happy because I initially was only trying to proclaim it for Paradise Valley first,” she said. “I’m so thankful that Governor Hobbs was able to proclaim it in all of Arizona.”
The proclamation does not require Arizonans to participate in a particular event or activity.
Sophia hopes the recognition will encourage people across the state to learn about Duchenne and stand with the families facing it.
For her, this is not the finish line. It is the beginning of what she hopes will become her life’s work: finding answers for her brother and every family affected by Duchenne.
“I really want to base my whole future in studying genetics and learning more about medicine,” Sophia said, “and different ways that I can help.”
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