My daughter Dakota is a force to be reckoned with, a strong willed, happy, smart young lady with a wit that could knock you off your chair with laughter. She’s had the personality of a leader since her very first day on the Kindergarten soccer field. Never one to be a wall flower but beautiful as a rose. The light she has carried around since birth is contagious and could brighten almost any situation.
That light dimmed a bit when, at age eleven, Dakota was diagnosed with CMT1A. We hadn’t the slightest idea what CMT was or where it had come from. It turned out that after some testing, we learned that my husband, Dakota’s father, has a mild case of CMT1A that was never diagnosed.
We immediately dove in to find the answers, research, treatment, assistance – anything that could make the journey she was about to take as comfortable as possible. What I realized soon after is that there is no way to make the disease “comfort-able” for her. That is a hard realization for a mother.
Here is where I turn all credit to my husband, Joe. His dedication and effort at providing for Dakota knows no limit. I’m the researcher but he is the implementer! They began taking trips to NYC to meet with specialists, trips that always included some tears but also some fun, like father/daughter lunches or shopping stops on the way home. He is her rock (and mine). Completely unselfish, he never blinked an eye at his diagnosis of CMT, except in regards to how it would impact his girl. Their longest father/daughter trip occurred last April when they flew to Las Vegas to meet Mitchell Warner, CPO Owner of Ortho Rehab Designs and creator of the Helios brace. We had the highest of hopes that these custom braces would be the difference between night and day for Dakota. I am happy to report that we were correct.
This is not to say that we did not face challenges along the way in terms of adjustment (both physical and emotional). The physical adjustment is common and short-lived. But the physical adjustment was not my motivation for writing this piece. It was the emotional journey of Dakota embracing her Helios that I found so remarkable.
A good deal of mental preparation filled the weeks leading up to the trip, but no one (particularly a teenage girl) can really be prepared for the moment they first put on a pair of leg braces, braces that will likely be a part of their daily routine for the rest of their life. Being the fashion queen that Dakota is, panic immediately ensued! “How do I cover these?” “What am I going to wear?” “Everyone will be staring at me and asking questions, how do I respond?” She knew that physically her life was about to get easier but her seventeen year old mind was not ready to acknowledge or discuss the braces with her peers.
As each month passed, she came up with new and creative ways to incorporate the braces with her fashion style. Legwarmers, knee socks and altering clothes seemed to work for her; did I mention that she’s a seamstress and has designed a collection of her own clothing? Yup, she’s still a force to be reckoned with!
There have been many moments in the past year that have been heartfelt and inspiring. My favorite was when I received the precious opportunity to revisit an old pastime of walking around the ponds in our village and chatting about life with my daughter. When Dakota returned from Vegas, we took our first long walk since she was eleven years old. That was a gift. A gift I can thank bracing for.
Hi Kerin, Thank you for sharing your story about your daughter Dakota. I can tell she is a delight to those around her. I have an 11 year old granddaughter, her name is Sanoon. She was diagnosed with CMT 1A when she was 15 months old. She is starting through puberty and the CMT symptoms have increased. She is scheduled to get braces before school starts this year, 6th grade. I have so many questions, the kind doctors don’t answer. You sound like parents who will research to find every possible thing that will help Dakota. Sanoon is on the bashful side, and I worry about her starting a new school this year and wearing braces for the first time. Kids can be so cruel. I want to protect and shield her from all the hurt physically and emotionally she will encounter, but I know I can’t. If you or Dakota have advice you would like to share, I am very open to hear.
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I hope Sanoon had a good start to her school year.