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Patient Testimonials
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 Limb Lengthening Center 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
Participant of the Save-A-Limb Ride
Christine's Story
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 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. 
Andrew's Story
 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.
- Jenny Wu
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