From the words of a CMT Hero

by | May 19, 2014 | 13 comments


I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over. I always seem to get up off the ground and dust myself off. I realize I am either dumb or tough or maybe, a little of both. I feel as if I have seen a lot in my 35 years, and the years have broadened my mind both in endurance and faith, both which I find very useful. When I was a young boy growing up in a small family I noticed I never quite fit the average status so many of my friends fell into. I found things would take me twice as long to do, and being graceful wasn’t me. My father and I shared something that set us apart from almost everyone in our community. We were both living with Charcot-Marie-Tooth disease. Being a young boy stepping into my teenage years, this was very scary for me. I noticed a change in my abilities year after year, but the prime of my youth kept me from seeking further help. My father wore special orthopedic shoes referred to as “claw boots.” I remember the look of them sent terror threw my mind daily in fear of becoming disabled and left on the sidelines.

My youth slowly slipped away from me, and most of my time was spent sitting down or nursing a pressure ulcer that had developed on my foot. Years would pass, and I continued to work and lived a semi-normal life. My feet suffered a severe case of foot drop, and my hands were becoming increasingly weak. I would fall daily and drop things I had intended to hold on to. Often someone would notice my struggles with walking. I would choose to dodge the question and change the subject to avoid any pity or a medical suggestion. Mentally and physically, this was all a very heavy load to bear.

As I approached my 30’s I had noticed big changes in my condition and was scared to death of what was happening. In the meantime, I had met a young lady and our relationship had blossomed into marriage. I was truly the happiest I had been with my present life at the moment. The only thing amiss was my poor health and the reckless up keep of my body. I had been keeping all of this a secret from my wife in fear of losing her forever, a thought that was also a big part of my fear. She knew deep down that I was hiding a health issue from her, but out of love had never questioned my wellbeing. Late in 2011, things really took a turn for the worst and I found myself very sick. I knew in my heart I would have to begin to accept help. An infection was circulating in my body causing me to totally shut down. Time was of the essence as I paid a visit to my local emergency room. I was suddenly asked to make a decision that would change my life forever–amputation. The doctors told me that my feet were so infected from my reoccurring ulcers there was no hope in saving them I wondered if all the years of avoiding doctors, self diagnosing and self treating had brought me to this point. Instantly, I lost it, emotionally crying out and asking, “Why me, God, why me?” But there was no time for me to think about what had to be done, and I had to pull myself together quickly. When I woke up after surgery and I looked down, all I could see were bandages and two machines with wires and hoses draped over everything. I couldn’t see my legs at all but I was sure things were different than they once were. I felt fine, just tired and surprisingly in minimal pain.

The team of surgeons told me that in two more days they would do the final surgery on my feet to amputate them. Here we go again, I thought, with lots of emotions flowing through me. But the second surgery also went well, and I was thankful to hear the words of encouragement the doctors gave me. The amputation on the right side left me with half a foot. On the left side the amputation left just the heel, with a bone fusion of my remaining heel.

I endured months of recovery and being non-weight bearing, close to six to be exact. I appreciated every step I could take after I had the pleasure to stand. My prosthetics were custom-made to support my weight and were very cumbersome, but I had missed walking so much, I pushed that thought aside and had a huge smile on my face. I was still burdened by a small sore along the suture line on my right foot that would not heal. Keeping an open wound a lengthy amount of time raises the risk of problems developing, and sure as that thought replayed in my mind, I became sick with a very high temp and a throbbing pain in my right foot. I rushed to the doctor right away, but it was too late, I had contracted MRSA, a very dangerous infection. The decision was made to amputate below the knee on my right leg. The surgery went wonderfully and I was up and walking in a few months time. I remember the doctors telling me the more weight you lose, the better your life will be. I began counting calories and within a year’s time, during recovery, I lost 125 pounds. That year I accomplished so many great things for myself that I never thought I could do. I hiked, went mountain biking and fished regularly with minimal problems. Then, out of the blue my left foot began giving me a lot of problems. I had developed another ulcer caused by pressure from the prosthetic. This was the same spot that never seemed to heal completely. After discussing options with my surgeon and prosthetics team I made the decision to have another below the knee amputation. I awoke after surgery to the sight of no legs below my knees, a rather humbling feeling.

Today I am walking, with Charcot-Marie-Tooth by my side. I also am a bilateral amputee who is active, never wasting a minute of my precious time. Many things have come and gone in my past three years, and they have taught me a valuable lesson in life: never give up. If we honestly don’t think we can continue, we are not looking deep enough. The will to survive is buried deep within us and sometimes it takes almost losing a grip on life to regain what you want and more. CMT and my amputations have brought me closer to the things that matter the most in life like my family. They are my rock and my number one support system. Second, I rely on my God, because with Him all things are possible big or small. Last I look to my faith, because I never knew I was that strong until I was tested. Ironically, I thank CMT for opening my eyes to see a new world, appreciate new things, and hold dear every moment I am blessed with.


Learn more on this topic

Related Blog Posts

Join the conversation

Leave a Comment


  1. Vera Roede

    I would like to express my appreciation for your kindness supporting men and women that actually need assistance with that concern. Your very own dedication to getting the message all-around came to be astonishingly insightful and has constantly allowed ladies much like me to arrive at their targets. Your amazing helpful information implies a whole lot to me and somewhat more to my office workers. Thank you; from everyone of us.

    • Luis

      Hi Timmy, I would love to speak with you privately if possible. My email is [email protected] or if you can provide an email that would be great! Best Regards, Luis.

  2. Timmy

    Hey Francesca! Timmy here and I hope the day has found you well. Often times during my battle with cmt/amputation I found myself asking the same exact questions you are. Truly, deep down I believe its God’s will what will and is going to happen to us. My doctors and surgeons worked very hard to try and save what was left of my feet. If I would have underwent full amputation then I would have been a lot better off. But I didn’t know what the future held for me. I do know it made me a much stronger person to experience what happened to me. I always try and see the glass half full rather than half empty, if you know what I mean. I too, like you started showing signs of cmt and ulcers at age 15. My procedures started almost 17 years ago so my childhood was very trying and depressing. These past for years I have lived my life to the fullest So I wish you the very best in your journey. If you or anyone else would like to keep in contact contact me via Facebook. GOD BLESS YOU

    link below:

  3. Francesca

    Hi, I’m 45 and have been with cmt for 15 years. My mother, grandmother& uncle (probably more family cases too) are all cmt positive.
    I live in malaga, Spain and after a two year battle to cure a rancid ulcer with umpteen visits to umpteen different departments I’ve now been referred to the amputee department…. I have necrosis, I’ve done the hyperbaric chamber, ultimately I still have all my toes so I ask why am I now being referred to the amputee unit…..?…. Any advise welcome…

  4. Brian McNulty

    Hi I am Brian from South Africa, i have CMT and my three children as too my grandchild. In my early school years CMT was unknown in my country. I would get hidings for “dragging my feet ” at high school. Often was mocked and insulted. However this made me a very strong person and i own my own business today. Supports my whole family. One must awake in the morning and know that God is great. Count all the blessings and not focus on the negative issues. Be Strong and thank the Lord for each and every day we get to breath and admire the natural beauty that God has put on this earth for us to admire. To all who have CMT MAY GOD BLESS AND KEEP YOU.

  5. Lisa Romano

    Thank you Timothy for your story. I know your struggles as my Mom went through this throughout her life. She too became a double amputee at age 55. She was a great fighter. I hope you do well in the 5 Boro Bike tour..I completed it last year. All the best and keep on fighting..

    • courtney

      Thank you Lisa! I know Timmy appreciates the support and well wishes.

    • dawn millican

      Thank you for sharing your story. It is very inspiring. I too have CMT Disease. I had a toe amputation back in March after dealing with a pressure point ulcer that wouldn’t heal from May of 2014. I too had caught MERSA which led to the toe amputation. Then in July it still wasn’t healed and I developed another bone infection which lead to an amputation leaving only my heel. I am only one week out from the amputation surgery. Like you I to will not give up. Thanks again for sharing your story….Dawm

      • courtney


        Good luck on your upcoming surgery. Thank you for sharing your story and never give up!

      • Timmy

        Thanks Dawn and all the people who read my story. I cannot give a victory to CMT and I hope and pray we all stay strong.

    • Gregg Phipps

      Scheduled for right foot amputation in 2 weeks. Charcot has plagued my mobility forever, but especially since puberty. Thank you for your story and giving inspiration.

  6. Julie FitzGerald

    What an inspiring and encouraging story you have! Thank you so much for sharing it, providing hope to those of us who also struggle to overcome the emotional and physical challenges of CMT and for informing people who don’t have it about what we experience. So excited for you to represent us in the NY 5 Boroughs bike ride! Cheering you on!!

    • courtney

      Thank you Julie I know Timmy appreciates all the support!


Submit a Comment

Your email address will not be published. Required fields are marked *


Join for notifications on events, campaigns, & news