My dear friend lost her son to Neurofibromatosis II. I had the wonderful pleasure of knowing him. We do not live in a Third-World Country, but on Long Island, New York.
The diagnosing doctor told him when he was 10 years of age that he had this insidious disease, and didn't give his mom the chance to explain it to him. He just blurted it out, and started rapidly commenting that he should never get married, never have children, that it was fatal and ugly.... My friend was so shocked, she couldn't speak. She regrets that incident, regrets that she could not protect him from the brutality of how it happened. He was deeply impacted for the rest of his life, like this young lady. They never expected him to live past his teens, but he lived until his mid 20s.
He did not have much of a social life, and was home-schooled during his middle-school years. He would have liked to take college courses, but was unable to do so as he started to go blind, and lost an eye - it had to be removed. He continued to drive until the other eye began to fail him. He refused to sell his car, though. It was precious to him, as a symbol of his lost freedom and independence, and he held onto that memory with all he had. He got weaker and weaker, and more and more tumors grew, marring his face. When his father died unexpectedly, and he could not even attend the funeral because he was in a rehab center, recovering from his fourth or fifth brain surgery.
Finally, the doctors told his mom that there would be no more surgeries, because the condition had advanced so far that there was nothing more they could do but make him comfortable and curse time while waiting for him to pass. She took him home, and they cared for one another as days turned into weeks. He continued to lose sight in his remaining eye, until he went blind. He lost weight. He lost neurological strength. He couldn't walk anymore, and his hands couldn't grip. His memory started to go. Finally, one night, he left this world in his sleep. When she went to wake him for breakfast, he was gone.
This young man had amazing strength and deep warmth and a wild sense of humor. I enjoyed being with him, sharing time with him, laughing with him and learning from him.
There are many "beautiful people" in life, but they may have "perfect" bodies and ugly souls. They are greedy, dishonest, selfish, malicious, unkind people. This young man - he didn't look like the rest of us "typical" folks - but he was more beautiful inside than they ever could hope to be. He may have looked different, even "ugly" to those who didn't understand, but he was still a human being. You could touch him, hug him, kiss him... it was okay... you couldn't "catch" anything... NF-II is not contageous. He was worth knowing. He was buried with his grandmother, and his mother aches for him every day. They were best friends.
So please, folks. Become informed. Be educated. Don't be afraid or disgusted by folks with this disease. Although passed genetically, sometimes it is a mutation - a "hiccup" - which causes the disease, as was the situation with my friend. Neither she nor her husband were carriers, yet her son was born with it.
Read the site below, and consider making a donation:
The diagnosing doctor told him when he was 10 years of age that he had this insidious disease, and didn't give his mom the chance to explain it to him. He just blurted it out, and started rapidly commenting that he should never get married, never have children, that it was fatal and ugly.... My friend was so shocked, she couldn't speak. She regrets that incident, regrets that she could not protect him from the brutality of how it happened. He was deeply impacted for the rest of his life, like this young lady. They never expected him to live past his teens, but he lived until his mid 20s.
He did not have much of a social life, and was home-schooled during his middle-school years. He would have liked to take college courses, but was unable to do so as he started to go blind, and lost an eye - it had to be removed. He continued to drive until the other eye began to fail him. He refused to sell his car, though. It was precious to him, as a symbol of his lost freedom and independence, and he held onto that memory with all he had. He got weaker and weaker, and more and more tumors grew, marring his face. When his father died unexpectedly, and he could not even attend the funeral because he was in a rehab center, recovering from his fourth or fifth brain surgery.
Finally, the doctors told his mom that there would be no more surgeries, because the condition had advanced so far that there was nothing more they could do but make him comfortable and curse time while waiting for him to pass. She took him home, and they cared for one another as days turned into weeks. He continued to lose sight in his remaining eye, until he went blind. He lost weight. He lost neurological strength. He couldn't walk anymore, and his hands couldn't grip. His memory started to go. Finally, one night, he left this world in his sleep. When she went to wake him for breakfast, he was gone.
This young man had amazing strength and deep warmth and a wild sense of humor. I enjoyed being with him, sharing time with him, laughing with him and learning from him.
There are many "beautiful people" in life, but they may have "perfect" bodies and ugly souls. They are greedy, dishonest, selfish, malicious, unkind people. This young man - he didn't look like the rest of us "typical" folks - but he was more beautiful inside than they ever could hope to be. He may have looked different, even "ugly" to those who didn't understand, but he was still a human being. You could touch him, hug him, kiss him... it was okay... you couldn't "catch" anything... NF-II is not contageous. He was worth knowing. He was buried with his grandmother, and his mother aches for him every day. They were best friends.
So please, folks. Become informed. Be educated. Don't be afraid or disgusted by folks with this disease. Although passed genetically, sometimes it is a mutation - a "hiccup" - which causes the disease, as was the situation with my friend. Neither she nor her husband were carriers, yet her son was born with it.
Read the site below, and consider making a donation:
http://www.ctf.org/how-you-can-help/
Thanks for your time.