Perspectives of The Pompe World

Haley Hayes is a prominent and well-loved member of the Pompe Community. Her attitude, personality, and influence grow inspiration in everyone she encounters-bringing hope to many, like myself.  When delivered this diagnosis for my newborn 6 years ago, none of the scholarly articles could show me what life could look like with Pompe Disease and I desperately wanted to see it—I wanted first hand experience. Getting the opportunity to witness glimpses of the life Haley leads and her mentality around it breathed so much hope into me then, and continues to inspire me today. 

Unfortunately, Haley was not diagnosed early by newborn screening and experienced a lot of decline while finding answers. At 6 months old, she was finally confirmed to have infantile-onset Pompe Disease—a more severe and faster progressing form. Treatment started right away and the progression rate improved, though her medical journey was far from over. Haley has only ever known management of Pompe as an every day part of life. She is grateful to her family, care team, and enzyme replacement therapy for giving her the best chance at a good life—and a good life she has found by making the most of each day. She attributes her ability to stay positive to her family, her faith, and the Pompe community.

Though Haley does not walk, she maintains an optimal level of independence through the advanced technology of her power wheelchair, which she feels is the piece of equipment has made the biggest impact in her life. She can tackle varying terrain, can elevate levels, and can even stand for some periods. She feels this has been monumental in her sense of inclusion, empowerment, and independence. Gaining and maintaining optimal independence continues to be a goal that she chases and that her family supports. While the push for independence is not without its concerns, her family still encourage this, and have worked hard to help her achieve it in any way they can. 

Haley is embarking on two major life events that will be a huge leap in that realm. This fall, she is moving away from home a few hours away to live on a University campus and continue her college education. Her family is helping her through the process and logistics, and she describes feeling so grateful for that—noting that it can be “a lot.” I remember all too well feeling like a fish out of water trying to navigate getting admitted to college (WHAT IS A FAFSA?!) and we laughed about how so many can relate. She states that she feels nervous but more excited than anything. Being a social butterfly, I have no doubts that she will make many friends and continue to be a bright spot in her new-found community on a college campus. 

In addition to living away from home for the first time, she has also obtained her drivers permit, and has begun learning to drive. This has proven to be much more complicated than what the average person encounters when learning to drive, but her determination equips her with what it takes to learn—and determined she is! She travels around 4 hours away to learn to drive a vehicle with the appropriate adaptations for her power wheelchair and her physical abilities. Though it’s a lot of work, she feels it will be worth it in the end and looks forward to being a licensed driver one day. 

Her attitude around her life is something we could all learn from. When asked how she manages the harder parts of living with Pompe, and stays so positive, she mentions taking life one day at a time and not worrying about the future. She mentions feeling so grateful for so many things, and prefers to focus on that part of her life which she feels is much bigger than the hard parts. She carries this sentiment over when I asked her what she would like to say to a new family who received an infantile-onset Pompe diagnosis for their child. She replies with confidence, stating, “Live the life you were given. Don’t let your fear about what the future looks like keep you from enjoying life right now and take everything one day at a time.” She continues to add that all the additional appointments and considerations become the norm and that she doesn’t think twice about them now at age 20, because it’s all she’s ever known. She recognizes the life she lives as a “full and happy life” and hopes that families understand that they can do the same with the right medical care. She also strongly encourages connecting with the Pompe Disease community. She says that while her regular community is deeply cherished, the Pompe community “gets it” in a way others could not. She believes this is vital to staying positive and feeling understood. 

I can only imagine how proud her family must feel about the woman she has grown to be and will continue to grow to be. Her attitude is one that I look up to and find so much hope in, and I feel knowing people like her are pivotal in navigating this diagnosis. A huge thank you to Haley for being a bright spot in a place that can sometimes feel dark, and for sharing your story and inspiration to so many.

You can follow more of Haley’s journey via her Facebook page: https://www.facebook.com/HaleysHopeStrongerThanPompe