Jun 8, 2021, 8:43:30 AM CDT Jun 8, 2021, 11:35:44 AM CDT

A family finds answers and support for brothers with muscular dystrophy

Daniel and Miguel can focus on "just being kids" thanks to coordinated care for muscular dystrophy at Children's Health

Share:
Daniel and Miguel at appointment Daniel and Miguel at appointment

When Daniel was 5 years old, he began experiencing chronic stomach pain and had difficulty walking after playing for a particularly long period of time. Believing that he may have a food-related allergy, his pediatrician referred Daniel to Isabel Rojas, M.D., Pediatric Gastroenterologist at Children's Health℠ and Assistant Professor at UT Southwestern.

After several tests, including a biopsy of his stomach and liver tissues, Daniel, his parents, Lindsey and Raul, and his doctors still weren't sure what was causing his symptoms. Refusing to give up, Dr. Rojas suggested Daniel be evaluated by Diana Castro, M.D., Pediatric Neurologist at Children's Health and Associate Professor at UT Southwestern.

Dr. Castro noticed that Daniel's liver enzyme levels were elevated, even though his liver biopsy came back normal. She suspected something might be affecting his muscles and wanted to investigate further. A specialized genetic test confirmed Dr. Castro's suspicions and after months of searching for answers, Daniel was diagnosed with Becker's muscular dystrophy (BMD), a genetic condition that causes the muscles to weaken or waste away.

"At the time we didn't really understand what the diagnosis meant," says Lindsey, Daniel's mother. "But as we started to understand the impact of this disease and how it was going to affect our lives, we realized what a blessing it was to have a team of specialized doctors nearby that we could rely on."

Because muscular dystrophy is a genetic condition, Lindsey and Raul decided to have Daniel's younger brother, Miguel, tested as well. Within a week, Dr. Castro confirmed Miguel had BMD as well.

"We were still recovering from the shock of finding out about Daniel when we got the news about Miguel," Raul says. "Our two little boys were so full of life and energy and fun that it was difficult to think that they carried a disease that threatened to take all that away."

We're so grateful to have all these specialists working together in one place and so close to home.
Raul, Father

Coordinated and preventative care for muscular dystrophy

The brothers were soon introduced to the Duchenne Muscular Dystrophy Clinic at Children's Health which brings together a multidisciplinary team of experts to address the complex challenges of the condition.

The team taught Lindsey and Raul how to reduce Daniel's stomach issues by modifying his diet and helped them develop a plan to relieve his leg pain when needed. Miguel, who was just 1 year old when he was diagnosed, was having difficulty crawling. He began wearing specialized foot and ankle braces to help with his motor function and continued physical therapy to build strength throughout his body. After some time, he was able to run and jump around with his older brother.

"The team told us that our sons were still kids and we needed to let them play and be themselves and figure out what they can and cannot do," Lindsey says.

Danial at appointmentNeither Daniel nor Miguel have required significant medical intervention over the past five years and have remained relatively healthy. Daniel recently started on a heart medication to help prevent future heart issues, highlighting the clinic's focus on early intervention.

"Muscular dystrophy can affect many aspects of a child's health, from muscular function to breathing and heart function," says Nelia Soares, APRN, Nurse Practitioner at Children's Health. "Multiple studies have shown that starting cardiac medications earlier in life prevents the development of heart failure and improves the lives of boys with muscular dystrophy. We focus on preventive care to keep a child's body strong and avoid complications."

Both boys are closely monitored by Dr. Castro and a team of other specialists, including a cardiologist, pulmonologist and physical and occupational therapist, through biannual visits to the muscular dystrophy clinic. Lindsey says that while it can make for a long day, it is worth having all of the boys' appointments in the same place and at the same time.

"Previously, it felt like we were always going to the doctor, with one visit here and one visit there," she says. "Now, we can prepare for the day with lots of snacks and toys and see all of their doctors in a single day."

The coordinated care also ensures that everyone on the boys' care teams are on the same page, making it easier to address challenges collectively when they arise.

"We're so grateful to have all these specialists working together in one place and so close to home," Raul says.

Daniel and Miguel are now 9 and 6 years old. Daniel enjoys math, science, soccer and football and loves playing at the park with his friends and going fishing with his dad. Miguel has an amazing imagination that brings him on adventures to the moon and fighting alongside his favorite superheroes. He loves to swim and play video games with his brother and can often be found wrestling with the family's dog, Savannah.

"Our muscular dystrophy clinic allows our team to provide the best care for these kids and their families, which helps them have the best experience and outcomes," says Dr. Castro. "It's a joy to watch Daniel and Miguel enjoy their childhood, and we'll continue to do all we can to help them stay strong and active as they grow."

Learn more

A recognized leader in treating muscular dystrophy, Children's Health uses the latest research to extend and improve the lives of children with muscular dystrophy. Our team of neuromuscular, respiratory, heart and physical therapy experts work together to provide the best care and help helps children stay strong as they grow up. Learn more about our comprehensive muscular dystrophy care.

Sign Up

Stay current on the health insights that make a difference to your children. Sign up for the Children's Health newsletter and have more tips sent directly to your inbox.

patient story, treatment

Childrens Health