Teen battling muscular dystrophy loves life, music and laughing
By Mariann Hunter
Andrew Rocha is like many young teenagers. He loves music, singing at the top of his lungs – especially rap music, watching movies, is a major foodie – aspiring to be a chef someday, enjoys watching The Simpsons and is quite the gamer, especially when playing Fortnite.
But the 13-year-old from Elkhorn is also in a real-life battle, with Duchenne Muscular Dystrophy, which he was diagnosed with at the age of 6. DMD is a genetic disorder characterized by the progressive loss of muscle. It’s a multi-systemic condition that affects many parts of the body and leads to deterioration of the skeletal, heart and lung muscles.
Andrew, a seventh grader at Elkhorn Area Middle School, is wheelchair bound most of the time and will soon be fitted for a powerchair. There is only one problem: the family is in need of an accessible van. Enter Andrew’s Crew, a group on a mission to help them be able to purchase a van as well as other vital equipment essential to Andrew’s care.
The journey to his diagnosis began when Andrew’s parents, Joe and Gina Rocha, noticed his feet were extremely flat. Andrew’s physical education teacher also reported he was having a hard time running.
“In September of 2013, we took him to his pediatrician for a physical and soon after we were referred to Children’s Hospital for an orthopedic consultation. After many tests, x-rays, different range-of-motion exercises and a lot of stretching, it was clear this was much more than just a flat-footed situation,” Gina explained.
Doctors ordered a Creatine Kinase lab test – CK is an enzyme present in every person’s muscles. A normal range would be between 50 and 150; Andrew’s level was 17,600, which indicated muscle deterioration.
A few months later, in January of 2014, the family was referred back to Children’s Hospital, this time for a neurological exam.
“After two of their doctors examined him and he had a slew of tests, they told to us that he definitely has Duchenne Muscular Dystrophy. Unfortunately, it was the worst news we could hear. And so, our journey began to discover the best course of action for Andrew,” Gina said.
Traveling for treatment
For the last six years, Andrew has been participating in Sarepta Therapeutics clinical trial. Once accepted in the trial, the family began traveling to where related programs were offered, which began with weekly visits to Iowa for infusions.
In April of 2015, moved to Florida so Andrew could continue with the trial. In 2018, they moved back to Wisconsin to be closer to family and their support network. When the trial began, Andrew was one of the first 18 participants; today there are 260. The trial will continue through July 2022.
Andrew’s medical journey has included two muscle biopsies, four port surgeries (waiting on the fifth one to be scheduled,) hundreds of infusions – every week since January 2017, numerous doctor’s appointments and countless hours of tests, lab work and therapies. Andrew requiring a wheelchair most of the time has been an emotional transition for the family, according to Gina.
“He will be getting fitted for a powerchair soon, which we are hoping will give him some newfound freedom. Right now, we are not able to travel very far but we look forward to being able to travel with him and the entire family,” Gina said.
The family applied to the Jett Foundation’s Accessible Vehicle Fund, which was established in 2017 to assist families impacted by DMD in purchasing unaffordable but vital accessibility equipment. Unfortunately, the Rochas were denied at this time.
The need for a van is becoming more urgent, as the family is forced to use their 2010 Ford Fusion with almost 200,000 miles on it because Andrew can maneuver in and out of the vehicle. However, it’s becoming a safety issue, which is why Andrew’s Crew is focused on helping the family get a van.
Any additional funds raised will be used to purchase a safe and comfortable roll-in shower chair and a hoist that can help lift Andrew as needed.
About the family
Joe runs his own company, Rocha Construction, and helps coach the high school and traveling teams Andrew’s sister, Macy, plays on. Gina has been selling licensed Harley-Davidson products for the last 20-plus years and said her customers are like extended family who continue to support and pray for the whole family.
Macy is a junior at Elkhorn Area High School and is one of her brother’s biggest supporters. She plans on playing softball after high school and attending Northern State University in Aberdeen, South Dakota.
When the family visited the college, they had a meeting with the softball coach from the school. Andrew, who asked the coach how the wheelchair accessibility is at the softball field, clearly plans to attend some of his sister’s games.
Since COVID-19 hit, Andrew has been in virtual school since he has a compromised immune system. He said he likes math and reading.
“I like online school better – it’s a different pace than being in school. But I do miss being in school, you know, talking face-to-face and seeing classmates and teachers,” Andrew said.
According to Gina, the family is overwhelmed with the support system they have.
“The school district here in Elkhorn is one of the reasons we moved back to this area. They have bent over backwards to help – not only with Andrew’s schedule modifications, but most importantly by making him feel included,” she said.
If the family is able to get a van, they have plenty of things on their wish list.
“It would be great to be able to check out the Lego store at the Mall of American and go to big cities to eat authentic, ethnic food but most of all, we would love to be able to join Joe and Macy when they travel out of town for softball games,” Gina said.
Important lessons
Joe said balancing the kids’ schedules can be challenging at times.
“Andrew has weekly infusions and Macy typically has softball tournaments every weekend in the summer and fall. We are hoping to be able to all travel together soon if we’re able to get a van,” Joe said.
Andrew, when asked about how DMD impacts his life, said he hates the word handicapped.
“I like handi-capable. This disease affects my muscles, and the drugs help me with my heart and lungs,” he said.
Gina said the entire family has learned some important lessons while navigating through this heart-wrenching disease.
“Never take anything for granted. Pick your battles, Knowledge is power. Love those that love you… and even the ones that don’t,” she said. “And for the love of God, laugh! It’s all we can do. It’s all Andrew does, completely inappropriate most of the time along with his jokes.”
“I love it when Andrew makes up jokes and laughs at them because he thinks they are so funny,” Macy added.
Andrew said the answer to what makes him laugh the most is simple.
“My friends and family!”
To help support fundraising efforts for the Rocha family, visit gofundme.com and search “Help Andrew Get an Accessible Van.” The goal is to raise $35,000 and as of last week, more than $24,000 had been donated.
There is also a Facebook page, Andrew’s Crew (@andrewsfundraiser), that posts regular updates.
For more information about Duchenne Muscular Dystrophy visit mda.org.
