Alex's Story

Alex Rezkalla

Gene Mutation: deletion of exons 45-50

Alex could be described as full of energy and has shown his witty and silly personality from the very start. In fact, Alex was delivered two weeks ahead of his due date, after Dawn’s water broke while standing in the dinosaur aisle in Toys R’ Us picking up a gift for a friend’s birthday party. We joke that Alex heard the roars and wanted to join the party.

As an infant, Alex was constantly moving or making a noise in what seemed like an effort to entertain himself and others. The only time he was silent was when he was asleep. Alex’s zest for life continued into his toddler years. However, social interactions with peers were challenging. Alex started to fall behind on growth and development milestones. He wasn’t able to jump, ride a bike, run with a full gait, or walk up stair steps independently. Despite being told that Alex would catch up, we insisted on further testing. This testing culminated into a diagnosis.

August 17, 2015, is the day that shifted our family’s story. This was the day we were first told that our lively four-year-old son likely had some form of muscular dystrophy. It was confirmed that Alex had Duchenne Muscular Dystrophy (“DMD") through genetic testing in September 2015. Alex fell into the 13% of DMD patients amenable to a drug therapy currently in trial at that time. This therapy was not a cure but had been shown to delay progression in some patients. There was no question we needed to do this for Alex and to help science move forward. We secured the last spot in the trial and in January 2016, Alex received his first weekly infusion at Nationwide Children’s Hospital in Columbus, Ohio. Our family had hope.

Alex has stayed on this therapy, a weekly infusion, ever since. While this first generation therapy has slowed the disease, progression still occurs. Alex lost the ability to walk in February 2021 and uses a power wheelchair full time. The silly, witty, high-energy boy that we came to love at birth is still there. Although he is not always able to show that to others. The impact that Duchenne has on the brain (delayed executive functioning, OCD, and anxiety) makes it difficult for Alex to interact with peers in a normalized setting such as school and social events. This can feel isolating for him.

It’s hard to imagine the emotions of losing independence at such a young age while watching all of your peers gain independence. We are very proud of how Alex tries to not let Duchenne define him. He loves dogs, playing video games and board games, trying new restaurants, telling jokes, and going on adventures.

Olive Rezkalla

Alex has been obsessed with dogs since he could say the word ‘dog’. Anytime we encounter a dog in public, Alex makes his way over to the dog. He doesn’t just want to pet the dog. He wants to truly learn about each dog. Alex makes sure to gather all the pertinent information from the owners about breed, name, age, and favorite things.

We never felt we had the space in our lives for a dog as an active family with young children and both of us working outside of the home full time, But when our careers moved to working from home and Alex lost the ability to walk, we recognized that one door had closed and another door had opened. Alex needed something at home that would provide unconditional love and companionship despite his changing abilities. That positive energy would come in his favorite form - a dog.

Olive, an Australian labradoodle, joined our family in March 2022. She was a complete surprise to Alex and her gotcha day was one he will surely never forget. While not officially trained as a service or therapy dog, Olive takes it upon herself to be there for Alex. She waits outside his door for morning wakeup duty, escorts him on and off the bus each day for school, snuggles in bed with him for afternoon naps, hangs in the bathroom for showers, and makes sure any crumbs he might drop are cleaned up quickly.