Day 5 - Love Without Boundaries Cleft Exchange
I said that I would be featuring organizations and programs that I have personal experience with so anyone who donates would have some confidence that there is accountability, so let me tell you a story about this particular cleft exchange. Let me start with two words: LIFE CHANGING. This is the story not of a cute little baby with a wide cleft grin, it is the story of a 7 year old boy who had a lip repair sometime in his early life, but the fact that his palate was never closed was forgotten over time until his eventual caregiver (me!) had no idea -- who would assume that a 7yo had an open palate? When I tried to figure out why Timmy's speech was non-existent and his acting out behaviors so extreme, I was shocked to realize he had an open palate and tried to find someone who would close his palate as soon as possible. Unfortunately, this child had such erratic and uncontrollable behavior and virtually no speech that the first cleft team I asked determined he would never learn to speak and was too brain damaged to have the surgery. I was crushed; all I wanted was for Timmy to have a chance. So a year later I approached LWB about considering doing palate surgery on him when the team came to Kaifeng in 2012. And there is where the miracles started:
#1 - They said they would put Timmy on the list. I knew there was still a chance they could turn him away when they saw how difficult he was but at least there was hope.
#2 - After the intake examination they put Timmy on the surgery schedule. Thank you, thank you, thank you!
#3 - (And here is where it gets REALLY good) When Timmy was sedated and the American surgeon began getting a good look at the work ahead, he realized that the reason Timmy could not talk was not just due to the cleft palate. In fact, his voice box was out of position, so no sound could come out of it. With so many surgeries to perform in just a few days, the most logical thing to do would have been to close Timmy's palate and move to the next child, but what happened next still brings tears to my eyes: The doctor turned to his Chinese colleagues who were assisting and observing and said, "Well, we are going to learn something new today." Then he proceeded to demonstrate the way to reposition a voice box.
#4 - More? There's more? Well, yes, there is "the rest of the story". After 7 years of never being able to tell his side of the story, ask for what he needed or express his opinions, Timmy began to speak and even more importantly, the people around him began to LISTEN. They no longer saw him as brain damaged because he no longer behaved that way, and because of that his orphanage has agreed to begin his adoption paperwork. (Did I mention life changing?) His speech is still not very clear, but he has a voice, and he has hope. There are not enough thank yous in the world to express my gratitude for what LWB's Cleft Exchange did for Timmy. Helping, even a little bit, to fund the upcoming Cleft Exchange will make a lifetime of difference for someone. Donna
#1 - They said they would put Timmy on the list. I knew there was still a chance they could turn him away when they saw how difficult he was but at least there was hope.
#2 - After the intake examination they put Timmy on the surgery schedule. Thank you, thank you, thank you!
#3 - (And here is where it gets REALLY good) When Timmy was sedated and the American surgeon began getting a good look at the work ahead, he realized that the reason Timmy could not talk was not just due to the cleft palate. In fact, his voice box was out of position, so no sound could come out of it. With so many surgeries to perform in just a few days, the most logical thing to do would have been to close Timmy's palate and move to the next child, but what happened next still brings tears to my eyes: The doctor turned to his Chinese colleagues who were assisting and observing and said, "Well, we are going to learn something new today." Then he proceeded to demonstrate the way to reposition a voice box.
#4 - More? There's more? Well, yes, there is "the rest of the story". After 7 years of never being able to tell his side of the story, ask for what he needed or express his opinions, Timmy began to speak and even more importantly, the people around him began to LISTEN. They no longer saw him as brain damaged because he no longer behaved that way, and because of that his orphanage has agreed to begin his adoption paperwork. (Did I mention life changing?) His speech is still not very clear, but he has a voice, and he has hope. There are not enough thank yous in the world to express my gratitude for what LWB's Cleft Exchange did for Timmy. Helping, even a little bit, to fund the upcoming Cleft Exchange will make a lifetime of difference for someone. Donna