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Raising A Child With CMT - Elizabeth's Story



"He has what?" I asked when the neurologist mentioned something about sharks and a

tooth. Dr. Sum, the pediatric neurologist was using words like nerves, genes, muscle

atrophy, and progression. I wasn’t able to quite grasp what he was trying to convey, but it

did not sound good. Something was amiss with my 7-year-old son, Yohan, and now this

ailment had a name – CMT or Charcot-Marie-Tooth disease. When he told us this disease

was incurable and progressive, I completely lost it.



Before he left the room, he gave me a card, “Here is the website for the Charcot-Marie-

Tooth Association (CMTA). Call them for a packet of information. In the meantime,

continue with physical therapy, and occupational therapy. I’ll see Yohan in a year unless

something else crops up.” And that was that!



Neither my husband nor I tested positive for CMT, so why is it that my only child had a

heritable genetic mutation causing a life-changing neuromuscular disease? What did I do

wrong? How will we deal with this as individuals and as a family? What does the future

hold?



I would ask myself these and many other questions over and over again, trying to

understand, striving to make sense of why an innocent child, my only child, had to endure

such challenges so early on in life. Initially, I experienced grief in all its stages—denial,

anger, bargaining, depression, and acceptance—and just when I think acceptance

remained strong in my heart, I had setbacks, reverting to anger and sliding down the

ladder once more.



A World Shattered in a Million Pieces



My world shattered into millions of pieces that day, and I never thought we’d be able to

pick up all the scattered bits to rebuild our dreams, our hopes, and our wishes for Yohan.

I quickly learned this reassessment would not be a one-time project, but a repetitive task

taking time, effort, and a lot of soul searching.



Seeing a child struggling with pain, braces, physical limitations, and obvious differences

made me unspeakably sad. My maternal instincts told me to protect, shelter, cajole and

especially do something—anything—to make the world a friendlier, more secure place

for him. The more his self-esteem plummeted and self-confidence lessened, the more I

would try to make his life easier in any way possible.



Yet, kids are resilient and smart. On some level, Yohan felt my fears and reflected them

back by becoming more and more anxious, less focused, and simply put, a very unhappy

child. Something had to give.



What Else Could We Do?



Lightening his load did not seem to be the answer, and neither did catering to his every

need. In retrospect, I was allowing him to be more dependent on me for everything, and

his teachers in school commented on his lack of autonomy and self-motivation.



My husband and I thought long and hard about what was playing out before our eyes and

decided to get some help from a therapist who counsels families on raising children with

medical issues. Intuitively, we knew what measures needed to be taken, but implementing change is hard and we desperately needed someone to guide us. Slowly but surely, we stopped treating him as different and let him experience the world on his terms. For me, this was probably the hardest, but most essential job I had as a parent of a child with special needs.



Tools for Independence


Working together, my husband and I learned how to provide Yohan with the tools needed

to be independent, self-sufficient, tenacious, and hopefully, optimistic. After numerous

discussions and a lot of trial and error, we got on the same page and worked as a family

towards common goals. My husband started bringing Yohan on camping trips, desert

excursions, and kayaking adventures, treating him like every other kid on the trip.



I changed my mindset, letting him blow off steam on the way home from school, and

listened without judging by creating a safe space for him to open up and talk. Sure, I still

tended to stray at times, fretting over hypothetical possibilities, living much too far in the

future, and being obsessed with “what ifs”—but a shift was taking hold, and overall, life

became more manageable and much more fun.



When all is said and done, Yohan was not the top athlete in his class, so we had the

opportunity to do things a little differently, creating a life full of enriching and rewarding

experiences. Over the years, our motto has been, “Let’s Make it Happen.” We follow our

dreams, live in the moment, cultivate new experiences and live our best lives possible.

Yohan became an expert archer, was scuba-dive certified, visited the Galapagos Islands,

volunteered many hours to CMTA, and graduated from a first-class University and

Graduate school. He is now working in the field of HR for a local start-up company and

enjoying his success.



Encouragement For Parents



If your child/children have CMT, life can still be enjoyable and fulfilling. There is no one

road map to raising a child with CMT, but here are a couple of key concepts I often share:

-Accept (eventually) the CMT diagnosis – it’s the first step.



  • Talk about CMT with family and friends; don’t hide it.

  • Help your children describe what CMT is, in their own words, if asked.

  • Let your children know it will all be okay because it will.

  • Embrace challenges and praise your children for doing their best.

  • Create a safe space for your children to talk about frustrations and anger.

  • Let go and let them live their lives to the fullest, with autonomy and independence.

  • Laugh heartily and often. Laughter really is the best medicine.

  • Involve yourself with the CMTA. We have so many resources for parents and kids alike.


Camp Footprint changes lives. Our volunteers make us shine. Get involved and meet

forever friends who understand. Neither your children nor you should deal with this

alone. We are better together.



I could not be prouder of Yohan. He’s turned out to be kind, empathic, funny, and

optimistic. He never complains about his CMT, and lives with the knowledge that every

day is a blessing, He has a supportive extended family and friends who love him for his

authentic self. If there is just one gift with which I wish to leave him, it is the knowledge

that he can achieve his heart’s desire. He just has to believe!


- Elizabeth Ouellette





Elizabeth Ouellette has been volunteering her time with the CMTA for the past 20 years. She created a school-based program, Teaching Kids About CMT, built the national CMTA Branch network, initiated CMT Awareness week, co-founded the Cycle 4 CMT and launched the CMTA’s official podcast CMT 4 Me Podcast with her brother, Chris, who is also on the CMTA Board of Directors.


She loves working with the CMT community and is happy to be a resource for you and your family: elizabetho@outlook.com



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