Music has been a part of Ally’s life for as long as she can remember.
Diagnosed with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome as an infant, Ally has faced many challenges, including visual impairment, missing fingers and toes, and a cleft lip and palate. She’s been through countless surgeries and hospital stays. But, she has never let those experiences define her life.
Ally is much more interested in letting her musical abilities take center stage, thanks in part to the NFED Family Conference, where she began planting the seeds for her growing future in music.
Ally attended her first NFED Family Conference when she was just a year old, and it became a turning point in more ways than one.
“At the NFED Conference, they used to do these talent shows and a bunch of kids would perform,” Ally recalls. “I sang a little song on the stage when I was four. I think my mom was like, ‘Yeah, she likes singing songs. We’ll put her on a stage and see what happens.’”
That moment sparked Ally’s lifelong love for music and set her on a path that continues today.
Ally’s Present and Future in Music Therapy
Now a rising junior majoring in music therapy at Florida State University, Ally is using her talents and life experiences to help others.
“The thing I love about music therapy is that it’s so universal. Music is such a source of comfort and healing. For someone with a rare condition, songwriting can be a really beneficial way to deal with feelings and express them positively.”
Ally knows firsthand how powerful that can be.
“I think back to all the times I spent in the hospital as a kid,” she says. “Having a music therapist there to focus on something other than the physical or emotional pain would have made such a difference.”
Even studying music hasn’t come without hurdles.
“Because of my visual impairment, I read Braille music,” she shares. “And reading with your fingers, then playing piano with your fingers—when you don’t even have all your fingers—that’s definitely something we had to figure out.”
While Ally’s voice serves as her primary instrument, she also plays string instruments like the autoharp. This was a necessary modification for Ally, as the guitar plays a significant role in music therapy. The university program’s willingness to modify the instrument to meet Ally’s needs sparked a passion in her to make the same possible for others.
It is also what Ally will talk about at this summer’s Family Conference, where she will lead a workshop on music therapy.
“My plan is to kind of just talk about the benefits of music therapy, and also talk about ways that instruments can be modified or adapted. If you know your hands aren’t shaped the same way as other people, you can still participate in music, because I think that would be really cool. And that’s actually what we’ve been kind of talking about in some of my classes this semester.”
Ally will not only share more about her hopes and dreams for the integration of the practice for people with rare diseases, but also give attendees the opportunity to experience music therapy firsthand. We could not be more excited for this new session.
Growing Up in the NFED
We have been privileged to witness Ally grow up in the NFED. Her family has played an integral role in the life of the NFED for almost 20 years. They have offered countless support and encouragement to people navigating life with ectodermal dysplasias. Her mom, Kristin Matus-Kelso is an NFED family liaison. They also organized Rally for Ally, a major fundraiser that ran for 15 years and raised over $259,000.
Ally’s family have hosted 15 Rally for Ally fundraising events in their town state of Virginia.
A poster child for the organization, Ally has remained connected to the community even as a young adult and we love it! Connecting with young adults who are affected by ectodermal dysplasias is one of the NFED’s major focus areas for the next several years.
“Experiencing [ectodermal dysplasia] as a child is a lot different from experiencing it as a teenager [and] a lot different from, you know, experiencing it as an adult. I don’t want to sit here and tell you that it’s gonna be, you know, unicorns and rainbows and sunshine every single day, because it’s not. That’s just not the reality. But, I think you know, with the resources and the community and the connections that the NFED provides, I think that there’s a way to persevere and live a happy, productive life.”
Ally’s journey with ectodermal dysplasia is a beautiful example of growth, resilience, and the power of community. The NFED helped plant the seeds of confidence, creativity, and purpose in Ally’s life. Now, she’s blossoming into a young woman ready to give back through healing.
We are so proud. And, we know her story is made possible by the contributions of so many.
This spring, help us plant more seeds of hope. Donate today and be part of Ally’s story and the stories yet to grow.
