Hello, I am so glad you are here! Take off your shoes, prop up your feet, and take a deep breath. You are welcome just as you are.
Some days are permanently etched into our minds. One that will always stand out to me is Jan. 22, 2018.
Then 16 years old, my son Noah had been having health problems for a couple of years, including voice issues, scoliosis, and imbalance. After seeing multiple specialists without receiving any answers, we found ourselves sitting in the exam room of a pediatric neurologist in Birmingham, Alabama.
After his assessment, the doctor went to his computer, which was close to where I was sitting, and typed the words “Friedreich’s ataxia.” He said he thought it was a possible diagnosis, but genetic testing was needed to confirm it.
Noah was sitting on the exam table, somehow oblivious to what the screen said. I jotted down the words, and as we headed to the lab for multiple blood draws, I did what one never should do in that situation: I Googled the diagnosis.
Many scary words and images popped up on my screen. I have never fought so hard to hold it together, but at that moment, I had to struggle to do so for Noah’s sake. I immediately knew it was the diagnosis we had been searching for, because his symptoms lined up too well.
It was a long, 2.5-hour drive home that day as the words “degenerative” and “no cure” echoed in my mind. As soon as we arrived, I took my husband, Brad, aside and privately lost it. Flooded by tears and fears, I wanted to hide in my bed and never come out again.
Receiving bad news can make one feel like they’re drowning — alone, as if lost at sea with no lifeboat. We felt like that for a few months as we awaited confirmation of Noah’s diagnosis.
But slowly, we found our way. Noah became part of a clinical trial. We learned more about FA and ongoing treatment research. And we met some wonderful doctors and medical teams who not only were well informed, but also really cared. We also got to meet other families sharing our road. All around us in that dark ocean were glimmers of light that, as we looked up from our own situation, made us understand that we were not alone.
Thankfully, three years later, here we are, still with tears and fears sometimes, but currently with our heads above the water.
There is a word that has pulled me out of my despair time and time again: hope. When I want to give up, when I want to lie down and stop trying, hope finds me. Sometimes those glimmers come in the form of a rideATAXIA event, while others it might be a text message from a fellow FA mom. I just have to look up and see them.
Today, you may find yourself full and in a healthy spot. But if you happen to be in a dark place like I have been, hold on.
My desire is for this column to be a line thrown to you when you feel like you can’t come up for air — a glimmer in the waves.
The weight of caring for a loved one isn’t light or for the faint of heart. You may feel unloved, unappreciated, and like you can’t make it one more day. Here’s some hope, friend. You are not alone. Together we will make it. We will shine light for one another and keep life afloat until the day that, together, we cure FA.
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.
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