Two families fight for a cure for Duchenne muscular dystrophy
Six-year-old Yannick Etienne and seven-year-old Marko Filenko look like two normal, happy, adorable boys. They could even be brothers. You’d never know that they share a rare disease called Duchenne muscular dystrophy. Duchenne is a spontaneous genetic mutation that affects the muscles and bones in young bodies and almost always affects boys. It’s progressive and fatal – there is no cure.
Signs of the disease started gradually in both boys until the undeniable diagnosis came.
“That day, our world was crushed to the ground,” remembers Elena, Yannick’s mother. “The whole family was overwhelmed, broken, scared of the unknown and unanticipated horror, and of a fatal prognosis.”
It felt the same for Marko’s mom, Seda. “Our world turned upside down. It was as if a bomb detonated in the middle of our lives and we spent the new few months in a black fog trying to pick up the pieces and make sense of our new reality.”
In the case of both families, the parents say their boys were fairly normal when very young. But soon they noticed changes. Yannick couldn’t jump or run like other kids, and Marko couldn’t climb stairs or walk long distances. Their pediatricians assured the parents that everything was fine and they were just “late bloomers.”
But the Etiennes weren’t buying it and decided to take it a step further. They brought Yannick to a neurologist who ordered a blood test to see if there were enzymes in the blood indicating muscle damage. The normal range of enzymes is 1 to 100; Yannick’s was 38,000. As for the Filenkos, they brought Marko to a physical therapist, who ended up suggesting they see a neuromuscular specialist. Marko had the same test, and the same dire result.
Although these two families were living parallel lives, they didn’t know it yet. It wasn’t until the Etiennes and the Filenkos both attended a 2018 Duchenne Muscular Dystrophy conference that they met, shared, and bonded. Now both families have joined together to fight for their sons and share their hopes, dreams, and knowledge of the disease with each other.
Seda says, “We met less than a year ago, and the world fell into place. Not only do we share circumstances, but we have an entirely identical outlook on how we want to navigate this disease. I talk to Elena nearly every day, and it is absolutely therapeutic. We are both fighters and passionate about finding the cure for our sons.”
Elena adds, “We clicked and connected at our first meeting which unexpectedly lasted for more than six hours. We found out that we are also very like-minded and very passionate about all current studies, clinical trials, research, as well as science in general.”
One of the most wonderful things about that first meeting is that now the boys have someone to share with about their condition. Elena explains, “It makes them feel hopeful that they are not the only ones with ‘special muscles.’ It helps them to go through the hardship of tests and doctors’ visits, and just the isolation that this disease brings to their lives. They can’t run around and play tag, they do not go to recess. To have each other in this journey is a blessing.”
At the conference, the families were excited to learn about promising results from a gene therapy clinical trial that could double or triple the life expectancy of those with the condition.
“This was when Elena and I realized that we need to do everything we can to raise attention and push the momentum of these efforts and research,” said Seda, “so that our boys, and all of the families that we have come to know in this community, get access to this and future treatments as quickly as possible.”
To raise money for research in search of a cure for Duchenne muscular dystrophy, both families have organized a fundraiser called Love Cures. They’ve teamed up with CureDuchenne, a national nonprofit recognized as the global leader in research. The event will take place Feb. 16 from 6 pm to 10 p.m. at the Del Sur Ranch House, 15455 Paseo Del Sur in San Diego. The event will include a concert by Turkish singer-songwriter Noyan Krakas and his band, food, a silent auction, raffle, games and more.Tickets are $85 each and $150 per couple. Go to www.cureduchenne.org/love-cures/ to buy tickets or learn more.
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