In honor of Rare Disease Day 2024 on February 29th, local mom Michelle Fruhschien is sharing her daughter’s experience with Jordan’s Syndrome:
Becoming a teacher has been my dream since I was a middle schooler myself, and starting a family of my own was something that I had envisioned. As time passed, I reached both of these goals. I became a teacher, and in 2017, my son, Noah was born and showed me that being a working mom was difficult, but so worth it. 2020 was a year that so drastically changed the lives around the world when it essentially shut down due to the COVID-19 pandemic. Similarly, my life was also at a standstill.
My daughter, Hailey, made her early, dramatic entrance into the world, surprising us and causing great worry. It was not an easy delivery, but that was the easiest part. Once she was born, my Mommy heart knew — not exactly what, but I knew. I questioned everything and everyone — do you think? Could it be? Is there something wrong? Should we do more testing?
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I was always reassured with, Give her time. Don’t compare — she will be ok. But that was not enough. Being a special educator and an already seasoned mom, I felt it in my bones. I needed answers and I would only stop once I got one. I researched the internet incessantly, sought several specialists’ opinions, and received misdiagnoses, adding another layer of complexity. It felt like a maze with no clear path forward and uncertain about the next steps for Hailey’s health.
After advocating for answers and different medical care, I found a specialist who finally heard me, and her opinion led to an answer. Hailey was one of less than 200 diagnosed globally with an ultra-rare disorder called Jordan’s Syndrome.
Receiving an answer led to more questions, but what it truly led us to was a wonderful global family and the gift of sharing our story with the world and being able to help others. It is no coincidence that the year I was hired to work at Glenfield Middle School in Montclair, New Jersey as an English teacher, I simultaneously began graduate school for my Masters in Special Education at Montclair State University. I had no idea that special education would be an integral part of my professional life and become one of the biggest parts of my personal life.
While being fortunate to work in the Montclair Public School District, I truly believe the experiences as a special educator have helped me become a better mom and advocate for my children. But, being a mom to a child with disabilities has also shaped my perspective and allowed me to truly understand the complexities that all children have.
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One thing that I hope people can take away from our experience is that no one is alone in this journey, and with perseverance and support, you can find answers and a community to support you in your life’s journey.
