“I was born with a rare disease without even knowing it,” explains Fanny Z., a 14-year member of the Society with Morquio Syndrome Type A (MPS IV A). “No symptoms or signs—until I started walking. Mom says I would complain that my legs hurt, and I didn’t want to walk. I always wanted to be held.”
Like many living with rare diseases, the early stages of Fanny’s life were filled with uncertainty and confusion. What began as a child’s reluctance to walk evolved into a challenging quest for answers, as Fanny and her mother visited doctor after doctor, searching for a diagnosis. “[They kept] telling my mom there was nothing wrong. They said I was fine,” said Fanny.
As time passed, the symptoms became undeniable. Her knock knees grew more pronounced, which made her physical symptoms more visible to others.
“Now I was getting the attention but still no answers,” Fanny recalls. Her mother’s determination, though, never wavered. “She kept fighting for me, and finally, I was diagnosed with Morquio A.”
With a diagnosis came a new wave of challenges—surgeries that occupied her summers and treatments that shaped her childhood. “I didn’t understand the stares, why I looked different, why I couldn’t run. I was mad, angry, sad, and confused.”
But even as her body underwent surgeries and treatments, Fanny’s spirit remained resilient. Determined to live a full and meaningful life, she pursued her career in Business Administration and dedicated herself to work and volunteering at her church. It wasn’t until 2010, though, that she found a larger community of support— the National MPS Society.
“In 2010, I became a member of the National MPS Society, and together we have, are, and will continue to urge, promote, and support treatments—and soon cures—for other MPS families and myself,” she said.
Although MPIS IV A has been challenging at times for Fanny, it has not affected her spirit. “MPS IV A has made my life a roller coaster but it does not define me. I love life and have hope for a better tomorrow.”
Fanny’s story is a testament to the power of resilience and advocacy throughout much of the MPS & ML community. Through her involvement with the National MPS Society, she’s not only advocating for her own future but also for the future of thousands living with MPS.
Do you have MPS or ML, or know someone who does? Do you want to share your story? Click here to fill out a submission form for an opportunity to be featured on our blog.
