September 7 is World Duchenne Awareness Day: Levi’s Story

September 7 is World Duchenne Day, a day to help spread awareness about Duchenne muscular dystrophy among the general public and in the medical field. In recognition of this day, we are sharing the story of Levi, a Duchenne patient, and his caregiver and mother, Perlita.

In 2008, Perlita Hains decided it was time to take action. She had noticed that her son, Levi, was experiencing some developmental delays, especially when trying to stand. He would put his hands on his knees to stabilize himself and push up to a standing position. Perlita described this behavior to his physical therapist, thinking it was a funny, quirky movement that Levi was doing. However, the physical therapist recognized this as the “Gower technique,” which very likely indicates a lack of muscle and core strength. It is a hallmark sign of Duchenne muscular dystrophy.

About Duchenne Muscular Dystrophy

Duchenne muscular dystrophy is a neuromuscular disease, and it is one of the more severe types of muscular dystrophy. It is characterized by progressive muscle weakness that usually begins around age four and worsens quickly. As an X-linked genetic disease, boys are mostly affected, with girls only occasionally displaying mild symptoms. The disease is caused by mutations of the dystrophin gene. Symptoms of Duchenne muscular dystrophy include falling, abnormal walking posture, eventual loss of walking ability, muscle fiber deformities, intellectual disability (not in all cases), enlargement of the tongue and calf muscles, skeletal deformities, muscle atrophy, heart abnormalities, and difficulty with breathing. Treatment includes a variety of medications and therapies that can help alleviate symptoms and slow disease progression. Lifespan is usually into the thirties with good care. Better treatments for this disease are urgently needed. To learn more about Duchenne muscular dystrophy, click here.

Levi’s Story

The diagnosis was confirmed for Levi a few days later, on Christmas Eve of that year. While Perlita successfully recognized Levi’s slowed development, the diagnosis was devastating for the entire family. However, caring for and encouraging Levi, her youngest son, has brought the family closer together. Levi just turned 16 years old and uses a power chair full-time. Regardless of losing his muscle strength, he does everything he can to live a full and active life. He is a 10th grade student, volunteers for his high school swim team, and loves attending football games. Levi also really loves playing video games, which gives him a chance to interact with others without having to worry about his disability – everyone is on the same playing field.

Perlita and her entire family have made it their mission to spread awareness and advocate for boys living with Duchenne muscular dystrophy. Perlita works with many Duchenne non-profit organizations to raise awareness and funds for research. Her family’s favorite is the JETT RIDE from the Jett Foundation, a cross country cycling event for Duchenne siblings.

 

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