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Below is a link about NF and what my oldest daughter wrote about it:
http://www.cnn.com/2013/11/07/world/...ace/index.html
If you know me personally, you'll see the picture and know immediately that this artlcle is going to mean something to me. For those of you who DONT know why this matters let me explain. My father has Neurofibromatosis, aka "severely disfigured disease on this man." This disease has personally put an entire mark in my life, something I have to watch destroy my fathers body and also, a disease myself and my sister had to grow up getting tested for constantly. So let's start my rant with my positive. Dear Pope Francis, I am not of Catholic faith however of Church of Christ faith. I am not aware of how the pope system honestly works but you sir, have ALWAYS reached out in a true religious matter. I want to say thank you for TOUCHING a man with Neurofibromatosis instead of turning him away like he has the plague. You see, in my turning 24 years of life, I have watched thousand of people stare at my father like he was a monster. I have seen people take money out of his hand carefully only touching the money and not his skin like its a disease they will catch. I have heard people call him names, mutter terrible words and phrases under their breath at him, and even tell their children "don't look at the monster." As a child, my father couldn't attend my school functions, my plays, band concerts, dance performances... Either because of the extreme pain this disease has put him through or because he didn't want the children, my fellow classmates, to make fun of me for having a "disfigured" father. All because human beings can't accept a man who has a disease that effects his body, not his personality. So thank you Mr. Francis, I deeply appreciate that you practice what you preach. Now I turn my light to CNN. You hade an opportunity to shed real light to a disease that effects 1 out of 3,000-4,000 people in the US. I'm EXTREMELY disgusted that you want to call him a man who is severely disfigured. It dissapoints me that you decided to use the Catholic News Agency for information in this disease. Furthermore, thank you for focusing and bring detail to the disease. "pope Francis, pausing for a moment to pray and lay his hands on a man with a disfiguring disease. The man gently burying his head in the Pope's chest, his many facial tumors visible." You might not think of it this way, but using his facial tumors and "disfiguring disease" to describe him is like calling a black person a "N" word. You would never do that to someone of that ethniticity. You had a moment to educate people about a disease that destroys a person, and brings hardships to a family. Just like the parents of the children I went to school with who never told their kids to NEVER make fun of someone for the way they look. Because of an article like this, CNN, you just allowed more bullying to happen. See, children who attend school with another child who's parent has Neurofibromatosis don't understand this disease. They will ask questions to their parents, and when the parents answer, they will say "It's a severely disfiguring disease and thousands of tumors cover his body, don't ask anymore questions." Now, 2-4 of these children will leave it alone but other children, they will go to school and taunt, bully, harass, and eventually push that child away from everything. Why do I know this, because it lived that life. In elementary school I had 3 friends in 6th grade. 2 of them decided they couldn't be friends with me anymore because of my fathers disease. They were afraid they would catch it if they came over to my house. 1 friend to start my junior high school career. First day of school, my only friend went around and told everyone "if you touch, talk, or get near her, you'll catch a disease that puts tumors all over your body and make you ugly like her father. For 3 years I had my fellow classmates push me into lockers, trip me down stairs, spit on me, throw my books across the floor, and scream "go kill yourself so the monster disease doesn't go anywhere else." It doesn't end there, but you're getting my point. So thank you CNN for doing EXACTLY the same thing that all these parents do. You brought light to a disease and decided instead of bringing awareness, you would call him names and focus on the fact he was disfigured.
http://www.cnn.com/2013/11/07/world/...ace/index.html
If you know me personally, you'll see the picture and know immediately that this artlcle is going to mean something to me. For those of you who DONT know why this matters let me explain. My father has Neurofibromatosis, aka "severely disfigured disease on this man." This disease has personally put an entire mark in my life, something I have to watch destroy my fathers body and also, a disease myself and my sister had to grow up getting tested for constantly. So let's start my rant with my positive. Dear Pope Francis, I am not of Catholic faith however of Church of Christ faith. I am not aware of how the pope system honestly works but you sir, have ALWAYS reached out in a true religious matter. I want to say thank you for TOUCHING a man with Neurofibromatosis instead of turning him away like he has the plague. You see, in my turning 24 years of life, I have watched thousand of people stare at my father like he was a monster. I have seen people take money out of his hand carefully only touching the money and not his skin like its a disease they will catch. I have heard people call him names, mutter terrible words and phrases under their breath at him, and even tell their children "don't look at the monster." As a child, my father couldn't attend my school functions, my plays, band concerts, dance performances... Either because of the extreme pain this disease has put him through or because he didn't want the children, my fellow classmates, to make fun of me for having a "disfigured" father. All because human beings can't accept a man who has a disease that effects his body, not his personality. So thank you Mr. Francis, I deeply appreciate that you practice what you preach. Now I turn my light to CNN. You hade an opportunity to shed real light to a disease that effects 1 out of 3,000-4,000 people in the US. I'm EXTREMELY disgusted that you want to call him a man who is severely disfigured. It dissapoints me that you decided to use the Catholic News Agency for information in this disease. Furthermore, thank you for focusing and bring detail to the disease. "pope Francis, pausing for a moment to pray and lay his hands on a man with a disfiguring disease. The man gently burying his head in the Pope's chest, his many facial tumors visible." You might not think of it this way, but using his facial tumors and "disfiguring disease" to describe him is like calling a black person a "N" word. You would never do that to someone of that ethniticity. You had a moment to educate people about a disease that destroys a person, and brings hardships to a family. Just like the parents of the children I went to school with who never told their kids to NEVER make fun of someone for the way they look. Because of an article like this, CNN, you just allowed more bullying to happen. See, children who attend school with another child who's parent has Neurofibromatosis don't understand this disease. They will ask questions to their parents, and when the parents answer, they will say "It's a severely disfiguring disease and thousands of tumors cover his body, don't ask anymore questions." Now, 2-4 of these children will leave it alone but other children, they will go to school and taunt, bully, harass, and eventually push that child away from everything. Why do I know this, because it lived that life. In elementary school I had 3 friends in 6th grade. 2 of them decided they couldn't be friends with me anymore because of my fathers disease. They were afraid they would catch it if they came over to my house. 1 friend to start my junior high school career. First day of school, my only friend went around and told everyone "if you touch, talk, or get near her, you'll catch a disease that puts tumors all over your body and make you ugly like her father. For 3 years I had my fellow classmates push me into lockers, trip me down stairs, spit on me, throw my books across the floor, and scream "go kill yourself so the monster disease doesn't go anywhere else." It doesn't end there, but you're getting my point. So thank you CNN for doing EXACTLY the same thing that all these parents do. You brought light to a disease and decided instead of bringing awareness, you would call him names and focus on the fact he was disfigured.
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