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Meet Beck Cammarata, 7-Year-Old Living with Duchenne Muscular Dystrophy

10/9/2017
 

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In many ways, Beck Cammarata is like most 7-year-olds. He plays Cops and Robbers at recess with his friends, loves cars, and as many kids do, fights with his older sisters. But Beck has also endured much more than most kids his age as a child living with Duchenne muscular dystrophy (DMD).   
 
Beck was born in June 2010 in Flowery Branch, Georgia. His parents, Brandi and William, had genetic testing done before his birth, but they did not specifically test for DMD, as that was not a disease that had run in their families. Early on, Beck did not exhibit any signs of DMD. For the most part, childhood milestones came right on time. He did walk a little late, and in preschool, was held back a year to take time to master simple tasks like writing his name. Signs began to show in 2015 when Beck started playing sports. “I noticed he wasn’t running like the other kids and I just thought he was being lazy and maybe wasn’t interested,” said Brandi.
 
Over Thanksgiving 2015, Beck fell. He said his leg just stopped working. He’d complained of leg pains for close to a year prior, but his parents assumed the discomfort was growing pains. By Christmas, his leg pains were growing worse, and his parents decided it was time to take him to a doctor.
 
“We almost didn’t even take him into the pediatrician, because I thought everything was going to be fine,” said Brandi. The pediatrician looked him over, had him walk, jump, and sit down on the floor. When Beck rose from the floor, the doctor noticed the Gowers sign. She ran some bloodwork and called the next day with her diagnosis. Beck had DMD. Even though Beck was only the second Duchenne's child the doctor had seen in 25 years, she knew the signs.
 
DMD is a rare disease; fewer than 200,000 cases are reported in the U.S. each year. It is caused by lack of a functional dystrophin protein, which helps keep muscle cells intact. Patients with progressive muscle disorders experience symptoms in early childhood and some lose the ability to walk as early as age 10. These patients, mostly boys, experience life-threatening heart and lung complications in their late teens and twenties. That’s why it’s crucial to catch symptoms early.
 
“Like Beck, these boys don’t have time to wait five and six months to get into the doctor. When there’s a problem, you have to be seen. You have to. Right away,” said Brandi.
 
The impact of DMD on Beck’s daily life is significant. Based on his physical therapist’s recommendation, each day and night, Beck completes a stretching regimen, works to conserve his energy and wears shin splints.  He engages in regular physical, occupational, and speech therapy at home, and every six months, travels to Atlanta to see Dr. Verma, who specializes in neuromuscular conditions. There, he undergoes EMG readings, six-minute walk tests, and scaler sign analysis. As a child living with DMD, Beck, his parents, and Dr. Verma need to watch his weight closely to ensure it remains steady. Gaining weight will affect his heart and pulmonary functions.
 
People unfamiliar with his condition often look at Beck as a healthy child, not understanding the importance adaptive technology plays in his life. Beck’s hands fatigue when he writes. Since being diagnosed, Beck has lost some of his range of motion. Though he can still climb stairs, to conserve energy, his family will piggy-back him up. He has a motorized wheelchair for independent movement over longer distances, like on his way back from recess, and while he still is able to play Cops and Robbers with his friends, he has to stay away from playground equipment for fear of falling.
 
“It’s not fun for Beck to have to stretch every day and night. Or to sleep in splints that make you sweat,” said Brandi. “So many kids get to go play basketball, and play other sports, but sports ended for Beck when he was diagnosed with DMD. Beck’s life now is all about appointments and conserving energy.”
 
Despite all he endures each day to cope with his DMD, Beck has attacked his condition with a positive attitude. As an ambassador for the Muscular Dystrophy Association, Beck uses his voice as an advocate for other children with DMD. “Sometimes when he goes to these doctor visits, he’ll say, I’m doing this for all the Duchenne kids,” said Brandi.
 
Beck’s DMD has been an emotional rollercoaster for his entire family but it has shown them how precious life is and that not a day should be taken for granted. His sister, Lauren, hopes to work in physical or occupational therapy to help kids like Beck, and his oldest sister, Destiny, has learned to become an advocate for her younger brother. “Beck has taught me so much about life. It is amazing to see his strength shine through it all,” said Brandi.
 
Beck’s family is well aware that having DMD means that Beck’s internal organs could begin failing at any time. “We’re definitely prepping for it. It’s very common and comes with the disease. We just don’t know when it might happen,” said Brandi. Every visit involving a bone density scan or cardiology testing gives Beck’s family a shot of anxiety. His condition could change at any time.
 
For now, Beck is living life to the fullest. He loves Lamborghinis and Ferraris and has managed to make friends with people in Atlanta who own them. He loves to go check the cars out, and even got to hop in one of the Lamborghinis for a ride to school.
 
While owning a Lamborghini may be a dream of Beck’s, his whole family dreams that one day they’ll find a cure for him. That’s why they are thrilled to share news that Beck was recently accepted in a clinical trial of a potential cure. As a participant in the trial, Beck travels once a week to Pensacola, Florida for treatments.  
 
“We really need people to donate to research to continue funding these trials. We need a cure,” said Brandi. “I want nothing more than to see my son beat DMD. I know so many other families feel the same way. We’re fighting to make that happen.”
 

Make a Donation

With your help, the AANEM Foundation can fund research that will improve Beck’s life and the lives of other patients with neuromuscular diseases. Together we can support researchers that are finding the treatments and cures for tomorrow. Help the next generation of researchers and donate today.
 
View the AANEM Foundation website for more information.


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