If 13-year old Alejandro had his way, he would attend MDA Summer Camp all year long.
The energetic seventh grader from the metro Atlanta area, who is living with Duchenne muscular dystrophy, has many passions; however, summer camp is undoubtedly at the top of his list.
During the week he spent at Camp Twin Lakes in Rutledge, Georgia, Alejandro had the opportunity to go rock climbing, fishing and swimming — all while making new friends in the process.
His mother, Griselle, laughs while remembering his reaction last summer when he returned home.
“I want to go to camp all year long!” she recalls him saying over and over.
Alejandro, who is the local Atlanta-area ambassador for MDA, is one of ten “Shamrockstars” who will be featured on MDA Shamrocks this year at retailers across the country. His gold shamrock will be available exclusively at Lowe’s Home Improvement stores. He is eager to help others and share his story as a Shamrockstar, as funds raised from previous Shamrock campaigns have benefitted him on his unique journey, one that has taken him from Puerto Rico, to Atlanta, to Columbus, Ohio.
Shock, Then Resolve
Alejandro’s story begins in Puerto Rico, where he was born in 2004. His father, Wilfredo, remembers him as a healthy, active boy growing up. Soon, however, his parents noticed his unusual gait.
“We saw a change in the way he was walking and decided to take him to a doctor,” remembers Wilfredo. “We didn’t know if he fell and hurt his hips [because of] the way he was walking. The neurologist ordered a blood test for him, and we found out he had Duchenne muscular dystrophy.”
“We had never heard of ‘Duchenne’ or knew what that word meant. We were in shock. We knew nothing about muscular dystrophy. We read about what Duchenne was, and it was very hard. We had a very healthy boy, and now we had to struggle with his condition.”
After the initial shock, Wilfredo and Griselle took action, quickly learning about MDA and the services it provided. After consulting with the local office in Puerto Rico, they weighed next steps for their son. Soon they learned about clinical trials for his condition and decided to take part in the research, enrolling in a trial for drisapersen in Columbus, Ohio.
It was a grueling travel schedule. Initially, they flew each week from Puerto Rico to Columbus so Alejandro could receive treatment. This required several overnight trips, including a stopover in Newark, New Jersey each time. Eventually, they decided to move to be closer to the treatments, settling in Georgia in October 2014. After a brief halt to the trial, Alejandro, who by this time had transitioned to a wheelchair, continued with the treatment before having to stop due to side effects.
According to Wilfredo, despite the setback with the trial, it was worth it to participate. “Alejandro is always willing to support research in Duchenne.”
Today, Alejandro is now receiving Exondys 51, the first muscular dystrophy drug to be approved by the Food and Drug Administration, a drug whose development can be traced back to money raised from campaigns such as MDA Shamrocks that help fund basic research.
The Impact of MDA Shamrocks
Alejandro has many interests that keep him occupied, entertained and focused on the future. His favorite subject in school is science, and he loves to help new students. He has many friends with whom he plays video games and watches movies. He even knows what he wants to be when he grows up: an internationally-renowned chef and restaurant owner.
Alejandro’s parents say that, beyond summer camp, MDA is always there for the family, providing the support and resources necessary for kids like Alejandro to navigate life with a muscle disease.
This support includes hope. For Alejandro’s parents, MDA was there for them during a confusing and shocking time after his diagnosis. By providing information and logistical support as he transitioned to a wheelchair and enrolled in clinical trials, MDA has been an integral partner in helping Alejandro live unlimited.
According to Griselle, “He has a lot of support from family and friends in the community. We always look to do the things that a normal person does, and we don’t limit what he can do or the sports that he can play. We always encourage him to do team activities.”
The funding for the support MDA provides comes from campaigns such as MDA Shamrocks, which galvanize local communities every year around the country.
To say thank you for their support, Alejandro recently visited with employees of a local Lowe’s, the largest retailer of MDA Shamrocks in the country. While wearing his green shirt and green hat, Alejandro shared his story and explained to the employees how their support helps fund research and, just as importantly, allows kids like him to attend summer camp.
When asked what he would say to people who donate to the MDA Shamrock campaign, Wilfredo was quick to point out the amount of sheer joy that summer camp brings to kids like Alejandro.
“I think this is the best experience for children with disabilities,” says Wilfredo. “It is a place where they fit in, and it is very exciting for them. For some, camp is their only opportunity to feel free and be who they are, without fears of being rejected.”
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