CMT: An Obstacle To Success?


Yohan in PT – Prediagnosis

“His test came back positive for what? Sure, that explains a lot, but what’s it called again?” I asked stunned and a lot bewildered. “CHär/- Kät/ -Merēd -TOOTH, which sounded just wrong when he said it. I guess it sounds strange ANY way you say it, but he was completely butchering the French pronunciation of my son’s new disease (we are all French – can you blame me?) The take away was that our beloved 7-year old son Yohan had a progressive disease of the nerves, WITH NO TREATMENT OR CURE, which would make his muscles weak and useless over time. I felt dead inside – for a very long time.

Alpine Slide, Stowe, VT

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 reformulate our dreams, our hopes, and our wishes for our son and our family. This reassessment took time, effort, and a lot of soul-searching, but we managed to accept the diagnosis and manage the Charcot-Marie-Tooth disease or CMT the best we could…. one day at a time.

As a mom, it was tough watching my child struggle with pain, braces, physical limitations, and obvious differences. Maternal instinct ordered me to protect, shelter, cajole, and, especially, do something—anything—to make the world a friendlier, more secure place for him.

For a while, school also became an inhospitable place, and bullies had their way of ruining a perfectly good day. Yohan’s self –esteem and self-confidence took major hits and his anxiety skyrocketed. The more I tried to lessen his burden by catering to his needs and lightening his load, the more resentful and withdrawn he became.  Unknowingly, I was giving him the message he should not go out of his comfort zone because the world is a dangerous, scary place. And, I was setting him up to be reliant on me for simple tasks he was able to do all by himself.

We found an excellent therapist whose specialty was counseling kids with medical issues. Our goal was to empower him by making him accountable for his actions, giving him more and more responsibility, and providing him the space he needed to become autonomous and independent.

Sounds pretty good on paper, but implementation was another story.

On one of our many trips to Vermont, Yohan wanted to try snowboarding. I subtly, but unsuccessfully tried to talk him out of it because I did not want him to get hurt nor fail. He has CMT-related back issues (kyphoscoliosis), tight calves and heel chords.

Kyphosis + Scoliosis = Kyphoscoliosis


I assumed the worse – in my frightened mind, he had at least a 75%, maybe 80%  chance of falling in the powdered snow, way over his head, and suffocating because he would not be able to stand up.

First Snowboarding Adventure

With the least amount of enthusiasm you can imagine,  I rented the snowboarding equipment, grumbling under my breath the whole time, and when father and son left early one morning after Christmas, I stayed home and tried to keep very busy, blotting out what was happening on the slopes.

Later that day, after what seemed like an eternity, Yohan burst through the door, still in one piece and with a look of content satisfaction on his face. “I loved it!” he blurted out proudly. “I’m going to take this on seriously! I had such a great day!”

Like many first-time snowboarders, Yohan took a good many tumbles and falls in the snow, but he was confident in his abilities. He knew what he wanted, so he left home with determination and a can-do attitude, and came back fulfilled with a sense of accomplishment.

That event was followed by many more like it and served to reinforce what I already knew as a parent but still found difficult to wrap my head around.  Even though Yohan has CMT, there are many things he can do with the right support, guidance, and freedom.  Gilles, my husband was exemplary in providing many unique opportunities for him to explore his surroundings. An avid skier, mountain climber, biker, etc….he went out of his way to find activities that he and Yohan could do together, as a team.  I am so grateful for my husband’s patience, effort and time with Yohan, as his childhood was full of fun adventures and learning experiences.  I wasn’t as thrilled about some of these outings at the time, but I usually saw the photos after the fact and they speak for themselves-they have memories- good and bad- to last a lifetime!   As parents, if we do not encourage our children to dream big, they might never know all the beauty, wonder, opportunity this world holds.

Kayaking with Gilles and friends
Yohan with Athos, Gilles with Chyna



Yohan is scuba certified, thanks to his dad.

Do you remember the movie about the life of Ray Charles, “Ray”? Despite his total and permanent blindness at the age of 7, Ray Charles’ mother treated him the same as any other child. He was made to do his chores, learn to get around without a cane, and fend for himself. “I won’t be here forever,” she repeatedly told him. Harsh though her treatment of the young Ray seemed, their story is filled with passion, love and many teachable moments. As hard as it may be, and still is, I have witnessed Yohan’s challenges, disappointments, and heartbreaks. But I no longer worry as I am confident he has the emotional fortitude to get through just about everything. If there is just one gift with which I wish to leave him, it is the knowledge that with an open and positive mindset, he can and will achieve his heart’s desire.


Archery is still one of his favorite pastimes.



Discovered: Modern Day Superman

Quentin Martin-Today


I’ve seen the name, Quentin Martin, like everywhere on the CMTA social media pages lately. And coincidentally, just last week,  he reached out to me about promoting for the CMTA.  But, before getting into all that, let me tell you a bit about our friend, Quentin.

A Little Background

As a youngster, he was very active. He loved sports, the great outdoors and climbing trees. He also idolized Superman and wanted to be just like him – a man of steel, flying through the air, catching criminals and saving humanity.

That dream faded as he approached his preteen years when he started to trip and fall – a lot. At 11 years-old, he was diagnosed with CMT – a progressive nerve disease for which there is no treatment or cure. He was fitted with plastic leg braces to correct foot drop. He hated those white, clunky plastic braces, which screamed, “Hey, you! Yeah, you! Look at me! Something is up with my lower legs. But you won’t find me…I’m hiding under these pant legs and I’m not coming out.” Big mouth braces! Mean kids pick up on that sort of thing pretty quickly.

Young Quentin

The Worst Is Yet To Come

If you think that is bad, there is more.

At age 12, Quentin suddenly lost his sight to another progressive condition: Leber’s Hereditary Optic Neuropathy. When I heard that, I was in a state of disbelief.

Seriously, can you even imagine?

Thankfully, throughout these difficult times, his mom provided unconditional support and love, infusing him with strength and willpower. Pity never crossed her mind. Her son would be okay. She knew it and she made sure he knew it. There would be no self-pity in her house. Instead, her main message was one of acceptance, determination, and encouragement. She also emphasized the importance of extending a hand to others in need – always.

Georgia Academy for the Blind

Depressed and withdrawn, 12-year old Quentin was enrolled in a school for the blind in Macon, Georgia, joining other vision- impaired youth learning to be in a world without the sense humans rely upon the most – sight.

The first couple of years were hard. Quentin was homesick, scared and sad. It wasn’t going well until the swim coach asked him to consider the swim team, and would not take no for an answer. This was a major turning point in his life.

It’s beautiful to know that neither Quentin’s  mom nor his coach ever gave up on him, and little by little, Quentin accepted the idea that he could live with CMT and blindness AND could do anything he set his mind to.

The Swim Team – (Quentin is standing in the back.)

A Miracle?

During his last year of high school, Quentin miraculously regained most of his sight after a prayer vigil in his name. The medical community couldn’t explain the improvement in vision, but who cares? Quentin went on to get his license, attend photography school, travel, work different jobs and travel.

Quentin in 2018

Today, Quentin is giving back through his work at the local Hand of Hope, Inc in Cordele, GA during the day, and the CMTA at night.  He spreads awareness of CMT, pushing initiatives to help the CMTA and sharing news to help others live well with this progressive disease. He’s even set up his own Facebook page – Quentinscauseforcmt:

Right now, Quentin’s new passion is promoting Check it out:  (

To date, Igive has brought in right around $9,000 for CMTA. With a little more support, I bet we could raise that much this year alone.  It’s so easy – Go to Select the CMTA. Install the teensy tiny button and you are on your way to raising money to support CMT, AT NO COST TO YOU!

Teensie weensie button.

Unfortunately, Quentin’s vision declined over the years and CMT does not get better, but he won’t let these conditions stop him from living the best life possible while ALWAYS helping his fellow man. His favorite quote goes something like this, “It’s not what life throws at you that makes the man, but what you decide to do with what life throws at you that really matters.”

Quentin might not realize it, but he has achieved his childhood dream. With his willpower, kindness, and benevolent actions, he has actually taken over the identity of his longtime superhero-CMT Superman!

It’s a bird. It’s a plane. No, It’s Super Quentin!

9 Surefire Ways to Feel More Positive

Everyone gets down from time to time. When I am not in a good place, I try to think about something positive and uplifting. Sometimes, well okay, often,  my mind brings me to unusual places, which make me laugh. Let me share 9 of my thoughts with you. Do any resonate?

You are a miracle.
  • You are all winners. I often find myself saying, ” I never win anything.” Then, I thought about this statistic: According to scientists, it is estimated that we have a 1 in 400 trillion chance of being born. 1 in 400,000,000,000! So, let’s say that there are currently about 7.5 billion people living on the earth right now.  Let’s create  553 planet earths, each with 7.5 billion people.  Now, you have to randomly choose just 1 person from any of the 553 planets.  That person is you! That’s how incredibly lucky you are to be alive today. Crazy, right? We are all winners in the lottery of life.


  • Freedom rocks. There is so much beauty in the world and most of us have the ability to enjoy the air, sky, animals, friends, etc. I often think of those in prison, in solitary confinement or people who live in countries where freedom is severely restricted. Take a minute to take in and appreciate the tiniest of detail in your surroundings. Then celebrate your freedom by dancing, throwing your arms up, kissing a loved one. Why? Because you can.

    Appreciate the beauty all around you.


  • Positivity. The way you interpret life events will definitely influence your feelings because thoughts create emotion. As master of your thoughts, you can put a positive spin on whatever happens to you, which will improve how you feel on a regular basis. And, if you end up in a slump, remember that you will not ALWAYS be in that same exact frame of mind. Laughter, joy, and happiness are not far away because feelings are temporary and fleeting. The way you feel will inevitably change.


  • I’m a modern girl. I am so happy I live in modern times, and not in the Middle Ages. Life does not look so fun back then. Serfs under the feudal system worked long and hard, doing back-breaking work all day long.  Women spent their days spinning wool and making clothes (seriously, can you see me successfully making clothes on a spindle all day? They’d throw me to the pigs). Only  50% of the people lived until 35, which is the average life expectancy of the time. There was no electricity and families lived in one room huts where 1/3 of the space was fenced off for the animals. The hearth in the middle of the room gave off heat, but the air was always smoke-filled. You get the idea.

    Daily life in the Middle Ages


  • Cave Girl? No thanks! I’m also glad I was not born a cave girl. With my horrible vision, I would have been TOAST very early on. By the time I was in 2nd grade, my teacher figured out I was very nearsighted. Today, I am considered legally blind without correction. So when I play out my pre-historic times life, I get this scenario, “That pile of leaves looks fun! One, two, three-JUMP!” Then, in midair, I freeze, “Oh snap! The pile of leaves just made a growling noise that sounds just like a sabretooth cat. Good-bye cruel world.”
Sabertooth Cat
  • The internet is amazing! Information 24/7 at your fingertips. And Skype helps connect to people far away, in the US and way beyond. Today, it’s so much easier to research a topic from home instead of going to the library, using the Dewey Decimal system to find a book on a topic of interest.Now, video call a friend or a relative….just make sure you are wearing clothes to be seen in, at least from the waist up!


  • This photo makes me nostalgic, but I prefer the internet any day!
  • Changing your first name is totally legal. Seriously, there are some parents who did not think straight when naming their child. Here are a few very unfortunate names I’ve found while browsing the awesome internet:
  • Jack Goff
  • Dick Smalley
  • Ben Dover
  • Donald Duck
  • Phat Ho
  • Preserved Fish (Thanks, Shirley!)






And, there are many, many more horrible names out there. Many of these names are found on prison warrants for arrest.  Well, what did you think would happen when giving your kids such embarrassing monikers?

  • Evolution is Cool For example, giants do not exist. Bare with me on this one. I always wonder how many ants I’ve unknowingly killed. To an ant, I am a huge monster, with big, murderous feet. I am so thankful I am not a tiny ant, and even more grateful that giants exist only in folklore. Can you imagine if we had to be worried about being crushed by giants roaming the earth? That would totally suck.  And on that same note, I must confess that I am happy the dinosaurs are extinct. I just could not deal with knowing that at any time, I might come across an enormously fast lizard with little tiny hands reaching out to devour me for lunch.

    Giants are fake.
  • CMT Sucks!  (Joyce Steinkamp, thanks for the lollipop idea!)CMT stands for Charcot-Marie-Tooth disease-a progressive disease of he the peripheral nerves. Know if you have CMT, there is much more information, research, progress and awareness of this very common, but rare disease than ever before in history. And our researchers are working day and night to provide treatments to stop CMT. Bottom line – hope is real. But, believing without acting will not get us over the goal line.  So, if you really want to feel good about yourself, get involved in a charitable cause like the CMTA by volunteering, donating, publicizing, joining or (choose CMTA as your charity of choice). Be part of the solution –

Jeana Sweeney, this image is for you. xoxo







Home For the Holidays – The Story of a True Life Adoption

Her parents passed all the tests with flying colors and were deemed to be fit and loving. The arrival date was only 2 weeks away – just 2 weeks! So little time to prepare for the new little one  – and right before the holidays, too – the best Christmas present ever!

I melted when I first laid eyes upon her – cute, energetic, friendly, outgoing and smart. But, she didn’t really look Tawainese. In fact, she did not look Asian….at all!  First of all, she was black and had huge brown eyes.  She understood a few English words and was not the least bit shy. I wondered who her parents were and how she came to this world. Whatever. In the end, it didn’t matter – she was now in a stable home with grateful and loving parents, relatives and friends.

Just last week, I offered to take her to the park for the morning. Now, it’s been a long while since I’ve had to care for a youngster, and I must admit feeling a tad bit nervous. With her bag chocked full of snacks, drinks, toys, etc, we headed to the playground. I lifted her into the back seat, strapped her in, and heard not a peep the entire ride.


“We are here!” I sang merrily. Once out of the car, she could not wait to join her friends in the yard. In fact, she was so excited, she darted for the playground, practically pulling my arm out of its socket. Once in the fenced-off area, I let go and she ran and played for well over an hour, pausing only to take a sip of water here and there. We had so much fun!!


Here is a picture of Shelby:


Isn’t she adorable?








Shelby – Learning To Use the Equipment!