When Arcadio Miguel Salinas Jr.’s son, Junior, started falling down at school and losing interest in meals, Arcadio didn’t know what was going on — only that something felt off.

A few months later, the family received Junior’s diagnosis of Duchenne muscular dystrophy (DMD), a rare genetic condition that causes progressive muscle weakness. Like many families facing DMD for the first time, they were overwhelmed with questions and unsure about what to expect.

Over the years, Arcadio has learned how to navigate Junior’s daily care, advocate for his son, and find moments of joy along the way. Looking back, he shares the most important lessons he’s learned and the things he wishes he’d known earlier.

1. DMD Doesn’t Always Show Up Right Away

Arcadio remembered the beginning clearly. Junior was around 6 or 7 years old and seemed just like any other kid — full of energy, running and playing. In 2012 and 2013, life began to change. “We would get calls from his school about him falling every once in a while and not wanting to eat at school,” Arcadio said. “He would be walking and boom — he would fall down like his legs would go out, just straight down.”

At first, the family thought Junior might just be tired or stubborn. But when he started crawling instead of walking, they took him to a doctor. That visit changed everything. “They gave us — his mom and I — a pamphlet about DMD. As I read it, I was in disbelief of his diagnosis,” Arcadio said.

Duchenne muscular dystrophy is a rare disease that progresses, or gets worse, over time. It’s caused by a genetic mutation on a gene called the “DMD gene.” According to Parent Project Muscular Dystrophy, the condition primarily affects males.

DMD causes muscle degeneration and weakness due to the lack of dystrophin, a protein that helps keep muscle cells intact. Although symptoms of DMD may not be obvious at first, early signs often include frequent falls, difficulty running and climbing stairs, and delayed motor skills.

2. The Way Healthcare Providers Deliver the Diagnosis Matters

One of the most painful parts of Junior’s diagnosis was how the news was delivered. Arcadio recalled being handed a pamphlet that said children with DMD usually only live to be 12 to 14 years old. “The way they talked to us, like there’s no hope for him, and it’s not curable,” Aracadio recalled.

The Muscular Dystrophy Association notes that, with proper medical care, some people with DMD are living into their 30s and even 40s, so the information Arcadio was given wasn’t up to date.

What Arcadio wished most was for their doctor to show more compassion and offer more information, not just about the risks, but also about the ways families can support their children and what treatments might help.

3. You’ll Have To Build a New Daily Routine Together

The early years after diagnosis were filled with change. “Having to get used to the routine,” Arcadio shared. “It’s like he’s still a baby and we attend to him 24/7, like taking him to the restroom.”

Junior once loved going to the park, climbing monkey bars, and swinging on the swings. Now, accessibility barriers and social stigma make outings harder. “We don’t go anywhere where there are going to be kids running around … asking him stuff,” Arcadio said.

Still, Arcadio and Junior found their rhythm: “He’s my best friend, as I am to him.”

4. It Takes a Team

When a child is diagnosed with DMD, caregiving often becomes a full-time commitment. For Arcadio, that meant stepping away from work and being with Junior around the clock. “It’s been, what, 12 years? I have never left his side,” he shared.

With his partner working full time, they’ve had to build a schedule that works for their family. They take turns caring for Junior and make space for each other to rest and recharge, even if just for a quick walk or a short break. Their commitment to showing up for their son — and for each other — has kept them going.

5. Emotional Strength Is Just as Important as Physical Care

Caring for a loved one with Duchenne muscular dystrophy can take a toll both physically and emotionally. For Arcadio, balancing the mental effort of supporting his son while managing his own health and well-being has been one of the biggest challenges. Moments of worry and sadness are part of the journey, but so are laughter, humor, and connection.

Finding ways to cope emotionally, whether through humor, talking things out, or leaning on loved ones, can help lighten the load. Building emotional resilience has been just as important as learning how to use a wheelchair lift or manage daily routines. Arcadio emphasized that staying mentally strong is key to making it through the hardest days — and to continuing to show up with love.

6. Some Assistive Devices Make a Huge Difference

Learning about accessibility options early can be life-changing. Arcadio said a mechanical wheelchair and a lift system helped tremendously, especially when his own back or hip pain flared up. “We got a mechanical wheelchair and a lift to move him sometimes when his mom is at work and my hip or back is hurting,” Arcadio said.

These tools made daily care easier — and safer — for the entire family.

7. DMD Doesn’t Define a Person

There are many misconceptions about Duchenne, such as assumptions about life expectancy and outdated ideas about ability. “Not all people in wheelchairs have lost all control,” Arcadio said. “Raise your kids to be strong-hearted and laugh.”

Junior recently graduated from high school and is looking forward to his 19th birthday in October.

8. There Is Hope, and Research Is Moving Forward

Although there is currently no cure for Duchenne muscular dystrophy, research is advancing. Treatments aim to slow the progression of muscle damage, and gene therapy continues to offer hope for the future. Arcadio recently came across a news story that gave him a boost of optimism. “It’s not a cure, but it will prolong the genetic mix function or something like that … which is exciting. I’m excited,” he said.

Talk With Others Who Understand

On myMDteam, the social network for people living with muscular dystrophy and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with muscular dystrophy.

Have you or a loved one faced a new diagnosis of DMD? What do you wish you had known earlier? Share your experiences in the comments below, start a conversation by posting on your Activities page, or connect with like-minded members in Groups.