The video below is mis new amigo, Jorge.
Jorge is different from many of our Peruvian amputees in any ways. The difference is that he is the youngest..... I had the distinct pleasure of having both the oldest and youngest patients this year. Jorge is 11yrs. and my other new amigo Abraham is 85.... Jorge is also the only congenital amputee in the group.
Congenital means this was a birth defect. He was never actually amputated. He is not missing anything. He has everything he started life with. You can imagine some of the benefits over other surgically acquired amputees....he has no phantom limb pain. His limb is strong and not overly sensitive.
The challenge is that we are trying to provide him a device to help him assimilate to a world that is created for us....not him. I doubt he thinks he needs a prosthesis. Some would argue it is NOT a prosthesis, since a prosthesis replaces a body part and he is missing NOTHING. Using a prosthesis probably feels like using a really tall shoe or stilt to him.
Compound that with the challenges of being a 11yr old boy growing up in Ventanilla, the small town we were sponsoring roofs for earlier in the week. This does not make for an easy life for Jorge.
Jorge's limb is officially described as phocomelia in the medical community. For Jorge, it means he has what looks exactly like a foot with 3 toes attached to a thigh that is less than 1/3 the length of his right side thigh...no knee, no calf...just foot attached to thigh. Hard to imagine, I know. To say what physical structures lay under the skin would be impossible without an Xray, and even then we'd be guessing.
Upon first trying to fit Jorge with his prosthesis, everyone was interested and wanting to see the youngest, most unique patient be fit. But in a room of crowded on-lookers he shut down. You could see a gloss come over his eyes. His innocent, curious smile receded along with his willingness to work with this strange looking shoe that his weird bald guy made for him.
After this fitting debacle, we regrouped. Through our translator, Flore, I asked Jorge if he would try again for me, manana. He agreed. In the video below, the only people in the room were Jorge, his mother, Flore and our friend Jonathan. With the small intimate and familiar crowd, Jorge did more than try. He impressed. He continued to work with Jonathan and Flore for another 30min this AM and 30 more in the afternoon, in the middle of the physical therapy gym within the parallel bars.
I believe the question remains, where do we go from here? Jorge lives in Ventanilla. Did you see the deep sand and slanted dirt roads of this village? Did you see the school and the houses? For a moment try to empathize what kind of work it would take to adopt this prosthesis into this young boy's lifestyle. He is 11 years old. He is far too young to understand and appreciate the need to do things with 2 hands, free of crutches. To save wear and tear on his right leg so that it can last the rest of his life. All he knows is that he is faster without his prosthesis and already plays soccer as good as Messi. Why should he need a prostheis? By the time he realizes, hopefully i is not too late.
Sadly, I do not believe Jorge will be a long time prosthetic user. I do not believe that the support structure exists around him to properly encourage adopting this into his lifestyle. I hope I am wrong.
Was it time and energy lost? We may never no. But it is possible that by trying, Jorge has inspired someone unknown to me, amputee or otherwise, to try a little harder or a little diffrently at whatever their challenge is, thus providing hope.
Do you know what you hope for? Are you aware of what fuels your hope? Whatever it is, you should do more of it.
Today, was another great and busy day...... Hasta manana