Patient Testimonials: Save-A-Limb Ride, Walk and Festival,
presented by Stryker
The Broken Bike and The Willing Rider
There I was, sitting at a table stacked with PowerBar gels and Aquafina water bottles on top of a hill somewhere in Maryland's horse country at 6 AM waiting for the sun to rise. The mental image of me in the dark was enough to make me chuckle. I had come out here for the Save-a-Limb Ride held by the International Center for Limb Lengthening in Baltimore where I had undergone many corrective surgeries for my congenital dwarfism in the past eight years. The event was to raise funds and awareness about the benefits of limb lengthening and reconstruction, especially for the children who had no other options except amputation and prosthetic limbs. Volunteering to run a water stop along the sixty-mile route just a few days after my very last surgery gave me the chance to reflect on the journey I had just completed.
From my position on top of the hill, I witnessed all sorts of cyclists that day. The steep road first went through a thick stretch of trees before coming up to a breathtaking view. Some cyclists, especially those who reached the top first, did not have to stop at my station at all. Others arrived panting and took some water before continuing on their way. For some, the climb was much more difficult, and they came up walking alongside their bikes. But among all these riders, there was one man who grabbed my attention. He had been actually among the first to emerge from the woods when his chain suddenly snapped. He had to carry his bike on his shoulders the rest of the way up. As his fellow cyclists continued on, he flipped his bike upside down and got his hands dirty trying to repair the break.
Although the cyclist knew exactly what was wrong, he did not have the proper tool to fix it. I could see his growing frustration as he paced around his broken bike. I winced as he gazed longingly at his fellow riders now far off in the distance. Those passing by either cracked jokes about his bad luck or gave helpless looks of sympathy. That poor fellow might have had to quit the race that day if not for a Good Samaritan from among the stragglers who stopped at my station with just the right tool for the job. The transformation in the rider who had slumped to the ground in disappointment was touching for me to see. The two worked quickly to reset the chain and get the bike back in working order. I waved goodbye as they went off together, and I don't think anyone pedaled as hard as he did when he got back on his bike.
That morning, I saw a little picture of my own life play out in front of my eyes. I was that man with the broken bike who had the will to win the race but not the bike. I've stood on that hill and felt that same frustration, disappointment, and longing. I've watched others whom I considered to be more fortunate pass by without any knowledge of my condition. I've felt that bitter sense of unfairness. Above all these feelings, I saw someone finally being offered the opportunity to turn everything around from a previously hopeless situation. I can't express how much it meant for me to see that man out of all the others at the finish line.
The most important lesson I have learned from my own hard experiences with limb lengthening is that the race is well worth finishing. I might be a bit slower or need more help than others who do not have the same challenges as I do, but I know that any problems in this race are with the bike, not the rider. Having just completed all my surgeries that took up most of my adolescence, I feel that my bike is now fixed and I am finally ready to ride. I know that I will pedal harder than anyone else.
The joy of being back in the race is so real to me as I head to college next year. Standing on top of that hill with my crutches as I watched him go on the road before me, I knew I was ready for the next journey.
Daniel Jehoon Aum
Volunteer for the Save-A-Limb Ride
This past weekend, my 10-year-old son Tayo and I had the opportunity to participate in the Save-A-Limb bike ride and festivities. It was a fun-filled weekend, thanks mainly to the fabulous friendships that we have made as a result of our experience with Perthes and the RIAO. Tayo was diagnosed with Perthes in March 2009 and had the fixator surgery with Dr. Standard in August. He is now about 9 months post-fixator. He was able to ride his bike for the whole 6 miles and had a ball playing with all the kids and parents and doctors. He LOVED throwing water balloons at Dr. Standard, but he told me tonight that his favorite part was talking to Dr. Standard while they were riding their bikes. But, the most amazing thing that Tayo shared with me tonight is this: today in school (5th grade) they had to write about the worst thing that has happened to them. Tayo says to me, "Guess what I wrote about?" I just looked at him. He said, "Not Perthes. It isn't the worst thing that has ever happened to me. Actually, it is one of the best things. And the fixator is one of the best things too. Think about all the friends we've met. Think about the bike ride. Think about all the things I can do now that I couldn't do before. "I just looked at him and said, "Wow. That is such an amazing outlook to have Tayo," and then tried not to cry! We never know how things like Perthes will affect our children. As hard as it is (and I know how hard that fixator can be) our children somehow seem to come through it with a perspective that is positive and that enables them to be better and stronger and more compassionate people.
Were it not for Dr. Standard and the team at RIAO, I fear that Tayo would not be in the same place that he is now, not physically or emotionally. Dr. Standard (and the fixator) has allowed Tayo to re-gain all the running and jumping and physical activities that mean so much to him. Dr. Standard and his team have also helped Tayo endure and come through this treatment with courage, strength, perseverance, and a sense of accomplishment that comes from being supported and encouraged by people who truly have your best interests at heart. We will be forever grateful to Dr. Standard and his team for the positive impact they have had on our lives.
Mary Anne and Tayo (age 10)
It wasn't an easy decision to have my hip replaced, and I put if off as long as I could. Finally, at the young age of 41, it was time. My hip had deteriorated to the point where I was barely able to walk, and horseback riding was definitely put on hold. Once I made the decision, my two main concerns were whether I would walk again without pain and would I be able to do what I dearly loved, ride? Five months after the surgery, I was back in the saddle again and totally pain free.
I am reminded to appreciate the simple things, like being mobile and not in pain. You don't think about it when you can walk out to the barn, wield a muck-fork or be in the saddle, but when you're grounded, you realize what you may have taken for granted. I believe that there are two things that are very important: First, make sure to have a great surgeon. Secondly, follow the rehab implicitly. Thanks, Dr. Delanois. You've given me my quality of life back and then some.
My son Andrew was diagnosed with tibial hemimelia, a rare congenital abnormality which effects one out of one million newborn babies. The predominant way to treat this condition was to amputate his leg and use prosthetics when he reached 10 months old. We thought any type of man-made part was not as good as his own blood and flesh; therefore, we were determined to do our best to save his leg. After searching all possible resources all over the country and in China, we were referred to the Rubin Institute for Advanced Orthopedics by a couple of orthopedic doctors. At the Rubin Institute, my son was treated by Dr. John Herzenberg and his colleagues.
It has been two months since Andrew had his surgery. Through the use of an external knee fixator, Andrew's knee contracture has been improved dramatically and his pain has been managed to the minimum. We are so glad we didn't rush to follow the "trend" by amputating his leg. Rather, we took the time and followed our heart. The Rubin Institute, with the top surgeons in the whole world along with their dedicated and caring staff, is the best place to treat this condition. We look forward to another miracle that they are going to make on Andrew's leg.
When Natalie was only 13 months old, she was stricken with a near fatal case of bacterial meningitis. In addition to the meningitis, Natalie contracted a bone infection in her right femur. The bone infection destroyed her growth plate and deteriorated the femoral head.
For the next four years, we sat back and watched as Natalie's condition worsened and doctors assured us that nothing could be done at her age except to wait and see what happens. She walked with a severe limp, experienced pain almost daily and was unable to participate in many childhood activities.
In September of 2009, I found the Rubin Institute for Advanced Orthopedics (RIAO) and Dr. Shawn Standard. His prognosis was much more positive and as a result of his advanced, progressive treatment methods, Natalie had surgery for the external fixator in April of 2010. Since surgery, Natalie has experienced an increase in her range of motion and has had no pain. Her range of motion continues to increase weekly and her dreams of playing soccer next spring will most likely become a reality. Just seven weeks after her fixator removal, she rode six miles in the Save-A-Limb bike ride in support of other children in need of surgery.
We owe a great debt of gratitude to Dr. Standard and his tremendous team at the RIAO. We have never met a more dedicated and compassionate person who truly cares about each patient as individuals and not just "cases." It is difficult to imagine how much pain Natalie would be in had it not been for Dr. Standard and the RIAO team.
Thank you, again, Dr. Standard for giving our little girl a chance at a normal childhood.
Mike & Missie Schaeffer (Natalie- age 6)