At the first annual World Clubfoot Day celebration we had in California this year, I had the pleasure of meeting Tony Spineto. I had come across his name a few times when researching clubfoot and knew he was an athlete. What I did not know was how inspiring he was! I normally don't rave about something or someone on my blog unless I am really impressed. I can honestly say Tony amazes me. This man has more medals than my eyes could handle! I was not born with clubfoot and I could not do half the things this man does.
After meeting, I contacted him and asked if he would be willing to do an interview. I was so delighted when he, without hesitation, agreed. I am pleased to introduce Tony to those of you who do not know him. He is such a strong example of how clubfoot does not stop someone and how determination can get you anywhere.
1. What was your childhood like having clubfoot?
Growing up I played several sports including soccer, baseball and football. From Pop Warner through High School. Having clubfoot has always been an issue for me. Although I never really let it get in the way of things I enjoyed, I had a lot of pain daily. I didn't experience much of my pain until my early teens and into high school. I never told anyone I had clubfoot and didn't tell anyone of my daily pain. I was embarrassed how my feet looked. I was very self conscious about my legs and feet. It was hard to keep up with others and I certainly wasn't the fastest kid at school. I managed to deal with it the best way I could.
2. We are so lucky to have had Dr. Ponseti come up with such a wonderful method of treating clubfoot. In what ways was treatment different at the time you were a child?
This is a great question and I think my experience with treatment is a common experience for people my age. At that time there was little to none known about clubfoot, let alone any type of new procedures or treatments. I had a "hybrid" form of Ponseti as I can gather from my mom's experience. I had a series of casting on one leg at a time, which my mom had to soak off before going to the hospital for a new set. I wore a "special" shoe without bars. Back then we simply put the shoes on the opposite sides. Wearing a shoe on the opposite foot was the method for manipulation and correcting over time. In addition, I had surgeries to correct whatever was necessary. At the time my surgeon told my mom that my feet looked great on the outside, but there was major structural damage because of the deformity. I believe this causes much of my issues today. Unfortunately, there was little education available for parents and many found themselves in a difficult situation. There was only one treatment available and surgery was the method used immediately after birth.
3. You are an Ironman Triathlete. We are so proud to have you represent for the clubfoot community! Can you describe what you do for a living?
Ironman racing is a one day endurance race consisting of:
-2.5 mile open water swim
-112 mile bike riding reaching speeds of 25mph+
-followed by a full marathon of 26.2 miles
= a total of 140.6 miles
A half Ironman is 70.3 miles, half the distance. These two distances are my specialty. There are other distances in the sport from a sprint distance, to an Olympic distance. These are much shorter and take not as much to time to finish. I Train about 20-30 hours a week consisting of two training sessions a day.
In addition to making a living as an athlete, I am a highschool teacher. I teach health and art. I work at a continuation high school for at risk students. Many of my students have issues with the law and many live in difficult circumstances. Although this environment can be challenging, I have been given the opportunity four times a year to share my story and journey into professional Ironman racing and offer inspiration to our student body, encouraging them take their circumstances and use them to inspire others despite individual limitations.
4. In what ways has having clubfoot changed your daily life, in comparison to someone with "normal" feet?
Living with Clubfoot at my age and given the fact that I had very archaic methods of treatment, I have to make several adjustments to my daily life. I have to plan ahead before I go out and make sure I have a place to sit when needed. Some days are very hard to move around short distances and walking can be a real challenge some days. Getting out bed in the morning requires some effort. I simply can not just get up and go. As a result of high volume training and putting many miles on my feet each week, I take holistic approaches to pain management. I am not a huge fan of pain medications. However, I use a vegan diet to control inflammation and make sure I follow other methods such as stretching, the use of muscle stimulation and compression wear.
5. You are so driven, it seems like you set a goal and achieve it. Was there ever a time you felt discouraged?
I have to be totally honest and candid here. I am discouraged almost daily, but I work very hard to keep going and achieve my goals. I do not give up. I believe I have a unique ability to rise above my challenges. Some days I just want to give up. I do not like living in chronic pain, and giving up seems easy to do at times. I don't like what I have to deal with, but I see a greater good in what I do and having Clubfoot is a gift I have been given. Not only do I love my sport, there is purpose behind what I do and this is what keeps me from giving up. Yes, I am competitive and love my sport and owe much of my success to my sponsors and family, but I am lucky that I have what I have been given. Again, it is extremely difficult being a long distance endurance athlete with Clubfoot, but it's even harder not to inspire the young kids and adults I have met over the years.
6. Who/ What inspires you?
I can certainly give you a list of endurance athletes that encourage me, but the real heroes in my book are the families and children living and dealing with the challenges of Clubfoot and many other conditions out there today. When I see young families struggling with the difficulties of clubfoot, I want to continue to be the best I can be, to show them that anything is possible. I am very motivated and inspired to read stories of children growing up to be amazing athletes and do what they enjoy, despite clubfeet. Nothing brings me more joy than seeing this, and to me this is true inspiration!
7. Your son Eli was also born clubfoot. How did you feel when you heard the news?
I was devastated and still deal with much from those initial days. You would think that having clubfoot myself I wouldn't be worried about his outcome especially in-light of my athletic achievements. However, I am still a parent, and a dad, and no parent wants to see their children deal with something out of their control. I was confused, scared and felt hopeless. I felt guilty that somehow I passed this along to him. It was a difficult time leading into his surgeries, boots and bars. To this day I try to stay positive because my son has become a incredible young man and I see much of my drive in him. I love watching him around children with clubfoot and see a lot of my life reflected in him.
8. What advice would you give clubfoot parents?
As a parent we have a unique role in our children's life. Our every action and word influences our children even when we do not recognize it. Given this, I always advise parents to encourage their children to never give up on what they want to do with their lives, in spite of clubfoot. We are a source of inspiration to them and our lives reflect what we are passionate about. I tell parents I meet all the time that their child will live a normal productive active life just like any other child. Some days are going to be challenging for them but it is in these times we can offer encouragement and inspiration.
9. I've heard of kids getting bullied for having clubfoot or feeling really down for their deformity. What is something you would say to your younger self?
I definitely felt very discouraged and self conscious about my deformity. Looking back I am not sure I would have changed anything. Even though I had issues with it I never let it get the best of me and I have carried that same mindset into my adult life. If anything, I would have done a better job at being more open about it and showing others that physical challenges come in all shapes and sizes, hidden and seen. Its funny, because my son has very noticeable small calves and he can not walk or run as fast as his friends. He just straight up tells them," I have clubfeet so deal it with it!"
10. Is there anything else you would like to add or want us to know about clubfoot or yourself?
I would like to encourage parents of children with clubfoot that advocacy work and raising awareness is vital as we continue to learn more about clubfoot and outcomes for adults. Believe it or not we know very little about Clubfoot in my opinion and it is often overlooked in the medical community. However, we have a voice and collectively we can move mountains. Please get involved setting up social media sites dedicated to your child's journey and support many wonderful organizations that work hard to treat children in developing countries. Start your own clubfoot support group or World Clubfoot Day celebrations in your cities. Its very important to be a huge part of your child's clubfoot journey!
After reading Tony's candid answers, I realized how lucky we are to have the Ponseti method this day in age. I know that because of this method Josiah and all kids properly treated by the Ponseti method have great hope for the future. As a parent I know the public's view and confusion of casting and bracing will not matter when they do big things such as Tony has.
I would like to thank Tony for taking the time to share so much of himself with us. I know my family was very inspired by his journey thus far. I can see his son, Eli, just as motivated as his father. I am sure I speak for all clubfoot families when I say we are very proud to have you as a voice in the clubfoot community. You are inspiring. Well wishes in your next marathon!
Thank you for reading. To connect with Tony you can find him here:
Website, Twitter, Facebook, Instagram
Thank you for reading. To connect with Tony you can find him here:
Website, Twitter, Facebook, Instagram