‘We’re All in This Together’
Welcome, friends! I hope you are staying cool and spending some quality time with those you love. I am so thankful for you and the part you play in this community.
It’s July and super hot here in Alabama, where I live. My family and I have probably been watching a bit too much Disney+ while enjoying the air conditioning! A recurring favorite has been the movie “High School Musical.” My daughter loved it when it originally came out and passed on her enthusiasm for it to my youngest son. Now, on any given day, you can hear my 5-year-old singing “We’re All in This Together!”
There is nothing like being understood by someone and sharing a common goal. As C. S. Lewis said, “Friendship … is born at the moment when one man says to another ‘What! You too? I thought that no one but myself …'” When we meet someone who shares something in common with us, there can be an instant bond.
As I think back to July 2018, I remember the excitement my family and I felt when we met another family who was going through the same thing we were. My son Noah had been recently diagnosed with Friedreich’s ataxia, so we barely knew what the disease was, much less anyone who had it.
When he became part of a clinical trial at the University of Florida, we traveled to Gainesville and were so grateful to find not only clinicians who could give us helpful information, but also other families who were walking the same road as us.
The bond that we share with our FAmily (Friedreich’s ataxia family) is one that cannot be easily described. Some we have only met online, but we still feel connected because we all understand what it is like to either personally struggle or watch our loved one struggle with this horrid disease. When we are together, it is such a good feeling to not have to explain things or receive strange looks but instead be understood and accepted.
The community rejoices when one of our FAmily members succeeds, and we mourn when another suffers. Our joys and sorrows are shared, making the load a little lighter. We share a common goal of a cure, and though it looks different for each of us, we work in our own ways to make it a reality. Some of us fundraise, some participate in clinical trials, and others keep going every day when things are hard to show the rest of us the beauty of a sacrificial life.
When we feel alone, life can seem so much more overwhelming, but when we have a group of people to share the journey with, life seems more bearable. Thank you, FAmily, for encouraging and giving me hope on dark days. I hope to do the same for you.
As we continue to work, each in our own way, I know we will one day reach our goal. When it comes to finding a cure for FA, we’re all in this together!
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.