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Journey to Joy: Kamari’s Story

When Priscilla Islas-McGaughy was five months pregnant with her daughter, Kamari, she learned news that rocked her family’s entire world: Kamari would be born with a rare congenital heart disease, Truncus Arteriosus Type 2, and would require surgery once she was born.

It was, understandably, shocking for an expectant parent to hear.

“The late-night conversations with my husband and I, wondering if she was going to have her dad’s beautiful, magical curls, my eye shape, which of our ancestors was going to come through… all of that had changed,” she said.

Where before there was only excitement, Priscilla now felt a crushing guilt.

A newborn baby holding an adult's finger

“I asked myself, did I fail my daughter before she even had a chance?” she said. “We knew that the journey was going to be difficult, but no one could have prepared us for what was next.”

Shortly after her birth, Kamari was transported to Dell Children’s Hospital in Austin, Texas, where she had her first open heart surgery at just 9 days old. What followed was five months of stress, hours-long pediatric and cardiology appointments, and — once her oxygen saturation levels dipped too low — a full repair open heart surgery.

Even weeks after the surgery, Kamari’s heart was sick and incredibly weak. When she went into heart failure, her parents and doctors knew that the only option was their last resort: operating on her heart. At just ten months old, Kamari had her fourth open heart surgery.

“We gave her kisses knowing this could be the last time we kissed her alive,” said Priscilla.

Thankfully, Kamari’s surgery was successful and thus began the road to recovery. Every day in the hospital, Kamari’s parents played her music. Priscilla and her husband have always been musical, hoping to immerse Kamari in the world of melody. They listened to everything from musicals like Mama Mia and Six, movie musicals from Disney, and modern favorites like Bad Bunny and Beyonce.

“Variety is important,” Priscilla said. “As she got stronger, we brought her a light-up piano to incorporate into her therapy. She still loves playing it to this day!” A young child sits in a hospital bed, playing with a toy piano.

During Kamari’s recovery, Priscilla was introduced to JoyRx Music and JoyRx Music Specialist Christy. Listening to Christy play songs like “Wheels on the Bus” and “We Don’t Talk About Bruno” proved to be an important part of Kamari’s healing.

“I was touched by Christy and how much she loved bringing Joy to these little superheroes and their families,” said Priscilla. “I watched my daughter’s face enamored by Christy playing the guitar, and I joked with her dad that we’ll need to budget guitar lessons in the future.”

At the end of Christy’s first visit, Priscilla felt lighter, what she described as a foreign emotion at that time. She watched Christy give Kamari a JoyRx egg maraca and felt a wave of relief for her daughter.

Priscilla says she’s thankful for everything JoyRx Music has given to her daughter. “Seeing JoyRx at Kamari’s follow up appointments has been a true pleasure,” she said, “and we are so thankful for the happiness that they bring to what can be stressful appointments.”

Today, Kamari is nearing two years old and has enjoyed what Priscilla calls “a medically boring year filled with learning and adventure.” She is taking independent steps and is the world’s fastest crawler. She enjoys climbing and practicing her light-up piano, symbols, and drums. She loves going on walks and visiting the park. Her favorite people are her mama and dada.

A father holds his daughter in his arms.

“We are so grateful for programs like JoyRx,” said Priscilla. “The love that exudes in their work is clear. It takes a giant reservoir of compassion to follow journeys like ours and bring light and happiness to the scariest moments.”

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