The CMT Research Foundation knows that moms in the world of CMT have unique challenges and trials. And we salute their tenacity, patience, and unyielding dedication. Here are the stories of two CMT moms; one whose daughter lives with CMT and another who is a patient.
Jennifer and Taylor, Pennsylvania, USA
Before the age of one, Taylor started exhibiting her first symptoms and signs of CMT; except that her mother, Jennifer, had never even heard of this condition, let alone knew that Taylor had it. While Taylor was seen almost weekly at the local children’s hospitals for what appeared to be seizures, It took many months of inconclusive seizure tests before a genetic test revealed that Taylor had CMT1A. What had looked like seizures to Jennifer and the doctors, was Taylor’s body shaking and locking in reaction to the pain of her condition.
These fits of pain were the first of many symptoms Taylor experienced in her early childhood, along with toe walking that required casting on both legs when she was little. In fact, Taylor’s doctors predicted that she would not walk past the age of 6.
However, Taylor persevered through her disease and is still walking at 11-years-old. Although she experiences muscle wasting in her hands and legs and she tends to fall more than her peers, Taylor is currently a cheerleader and defying her doctors’ predictions.
“Taylor is a very independent, stubborn girl who will fight through anything. If she’s told she can’t do something because of medical stuff, she will do it,” says her mother, Jennifer.
And while Jennifer knew nothing of CMT when Taylor was first diagnosed, she has spent the past decade learning about this disease and how best to support her daughter.
“Taylor is so caring and fun to be around. She stands up for what she believes in. She is my personal superhero”.
Lucy and Arabella, Scotland
In Scotland, Lucy is a mother with CMT to her beautiful 21-month-old daughter, Arabella. Arabella loves being a kid; she loves being outdoors, getting messy, reading books, and giving lots of hugs and kisses. She has a wonderful smile and is a great sleeper; a trait that comes in handy when Lucy tries to manage the fatigue her CMT causes her.
Unfortunately, fatigue is not the only daily struggle Lucy faces every day in motherhood. Many items for baby care are not easily operated with the weakness and lack of coordination often associated with CMT: difficult buttons and poppers on onsies, buckles and clasps that need to be pinched and snapped, and the struggle of carrying the weight of a car seat or a growing toddler.
But one of the hardest things for Lucy is not being able to physically enjoy all the parts of her daughter’s day. Because of her pain and fatigue, Lucy isn’t always able to jump in and play with her daughter in the moment; sometimes, she misses out getting to be as involved as she would like to be.
“My advice for all CMT parents is never give up and never doubt yourself. The latter is very hard, but although we may not be able to do all the physical things other parents do, we are raising children who will become more empathetic, more inclusive, and understanding of disabilities…that’s a pretty amazing thing!”
But Lucy has been fighting for motherhood even before her daughter was born. After receiving genetic counseling and being told that she had a 50% chance of passing CMT on to any children of hers, Lucy and her partner, Angus, went on the 2-year wait for IVF PGD to avoid the CMT gene. During this time, they found out they had become pregnant with Arabella. Fortunately, it was determined that the CMT gene had not been passed on to the baby.
Lucy hopes for the future where there is a cure for CMT and where there are successful treatments available. “With this condition being so unpredictable, it can be hard to plan for the future, but my hope is that all of us have a more positive future ahead”.
Lucy is also an ambassador for the CMT Research Foundation and helps raise awareness and funds for CMT research. She is an advocate and brings awareness to parenting with CMT on her Instagram @cmtlife_lucy. Visit her personal fundraising webpage to learn more about her story.