The Greatest Gift: Kaileen Nelson, Canada, Living with CMT2D

Every December, Kaileen looks for light.

Not just the glittering bulbs strung across her Canadian neighborhood — but the kind of light that reminds her that hope still exists.

Because for Kaileen, simple joys like wrapping presents or finding her voice again are no longer guaranteed. Yet her greatest joy — her young son, Jacob — keeps that light shining.

And the road to finding that light began long before her diagnosis.

At twenty-seven, when most young adults are envisioning their future, Kaileen Nelson received an answer to the mystery that had followed her for decades: Charcot–Marie–Tooth disease 2D, caused by a spontaneous genetic mutation.

She had spent her childhood and young adulthood with unexplained symptoms — weakness, illness and a confusing loss of strength.

“I’ve had CMT since I was born, but it didn’t affect me too much until I was around seven years old,” Kaileen shared. At that age, she became suddenly and seriously ill. Doctors were stumped. She spent six weeks in the hospital and lost significant strength during that time. When she recovered, life temporarily stabilized. For many years, her condition progressed gradually.

In her early twenties, everything changed. By 22, she began losing her voice — slowly at first, then completely over a few months. By 27, she required full-time BiPAP support, and her doctors were still trying to understand the cause. By then, Kaileen had lost mobility in all four limbs; her breathing was compromised, and her ability to speak was limited —  the diagnosis finally came.

After years of decline, her condition eventually stabilized. And in that unexpected stillness, something extraordinary happened — she became a mother.

“Having a child was something I never thought I’d be able to do,” she said.

While CMT has affected every single part of Kaileen’s life, the most challenging for her has been the loss of her voice.

“When you are disabled, communication becomes even more important, so losing that made having a disability more challenging on a day-to-day basis,” she explained.

No matter what challenge Kaileen faces, she draws strength from her family — especially Jacob, who shares her journey with CMT.

As she explains, “having such a difficult disability can make motivation challenging, especially when it affects everything in your day-to-day life. However, my family, and specifically my son, Jacob, gives me the motivation to find better ways to manage and ease my disability.”

Over time, CMT has forced Kaileen to adjust many things she once did with ease — especially during the holidays.

Christmas has always been her favorite season — a time to celebrate traditions, capture memories through photos, watch the lights year after year and enjoy the bounty with her family. While those joys have never faded, CMT has complicated parts of the experience.

One of the hardest changes has been losing the ability to wrap or open gifts. “I have to get help with these tasks now,” she said — a change that is especially emotional as a mother wishing she could wrap Jacob’s presents herself.

Despite these challenges, the magic of the season persists.

“Although my disability has progressed over the years, I am still able to enjoy all of the things that I have liked about the holidays, and I will continue to do so regardless of how I am affected in the future,” she said.

Her favorite holiday tradition — driving out to see Christmas lights — continues to bring her joy year after year.

And last Christmas brought a miracle of its own.

After being hospitalized for seven months, Jacob came home on Christmas Day — a moment Kaileen will cherish forever. “Christmas is always a magical time of year, but last year, it truly was our Christmas miracle.”

As Kaileen looks to the future, she hopes her son will grow up loving the season just as she has — and that CMT will never overshadow its wonder.

Her wish extends beyond her own family. She thinks of everyone living with CMT, for whom an early and accurate diagnosis is often difficult. Treatments remain unavailable, and progression is unpredictable. Kaileen is hopeful that research will change that — for all families living with CMT, and especially for Jacob.

“Treatments or a cure would mean a lot because it could potentially mean that my son doesn’t have to lose mobility and face challenges in the same way that I have,” she said. “For us, retaining as much strength and mobility as possible means a higher quality of life going forward.”

This holiday season, Kaileen holds onto the light — the kind that has guided her through every challenge, bringing warmth and joy even in the darkest moments. She dreams of a future where Jacob, and all families living with CMT, won’t have to face the losses she has endured.

Bring hope — and light — to families like Kaileen’s. Every donation counts, and all gifts are doubled up to $150,000 through December 31. Give them their greatest gift of all: a cure for CMT. Donate today at https://cmtrf.org/the-greatest-gift/