正文
Riveted by the book “The Boy in the Moon”, I could not put it down without finishing the last line. It was written by the father of the boy who suffered from an extremely rare genetic disorder cardiofaciocutaneous (CFC) syndrome. CFC is so rare that only about 50 cases have been reported in the entire world. CFC is so complicated as to be taken as other syndromes such as Noonan syndrome or Costello syndrome. In addition, an affected individual could have spontaneous gene mutations other than those identified from those affected, ie, without specifically known mutations in genes including BRAF, MEK1 and 2 etc, an individual could also be affected with CFC. The cause of CFC is thought to be disruption of RAS signal pathway, which is one of the most active and complicated cell-cell interactions in human body. The author described his journey of taking care of his sick son and learning CFC. Furthermore, the author presented readers a picture of the life of the mentally retarded and advocated the readers to fathom the values of those children deeply. Like many families with disabled children, the author and his wife as well as daughter experienced unimaginable hardships. The author and his wife took turns to take care of their sick kid who has trouble to sleep tight at nights for 8 years. Any night sleep without disturbance would be luxurious. Financial burden took them away from the thoughts of giving up their jobs as writers and becoming full time care givers. Not dissimilar to many other parents of disabled kids, they felt guilty to send their son to the group home, Hospital for Sick Children, because of the huge pressure that they considered themselves as irresponsible parents. Any life event would change an individual’s perspectives toward the world. The author started thinking about and researching on children and families with CFC as well as mentally retarded individuals. It is again unfortunately proved that technology is far ahead of what society can do for those sick kids. That they had to wait for 80 years to get their son into a center for mentally retarded kids simply because there was a long waiting list was one of the examples. Meanwhile, application of technology in medicine, such as understanding the etiology of those rare diseases is also far behind in comparison to the advancement of technology itself. After 11 years of taking care of his son, the author learned that the gene mutations have been discovered by a group of scientists/doctors. Unfortunately, the DNA testing for his son didn’t reveal any of the identified mutations. As a parent of a sick kid, when there was nothing he could do to change or cure his son, at least he would want to know the accurate diagnosis or the cause of the disorder. Even this request was deprived by the fact of gene testing. It is not uncommon to find no mutations in an affected individual, especially for rare diseases which we actually know a little about. The author is a professional writer. So I enjoyed his in-depth thinking about the rare disease as well as associated ethical issues such as the responsibility of parents and the society. He visited a center for mentally retarded people and tried to see the world from the view of the sick in order to explore the value of their existence. The author questioned the value of those mentally disabled people, just for the normal ones to feel good about themselves or they have their own values for their life though normal people cannot discern. The author is very courageous to present his fears as everyone does. I don’t know how to talk to a mentally retarded individual to be honest. I am afraid of them too, like many people do. I agree we can’t understand people with mental retardation without living with them. They have their own world, their own way of thinking and communication, which is defined as abnormal by us, normal people. When the author told his son, for example, that one of his friends dies, the boy’s reaction made me believe he cared about his friend and he felt sad about his death though he didn’t say anything. We can’t experience anything in our life. That’s why I like listening to different stories and exploring different lives. As the author narrated, I believe that we can learn something even from an abnormal kid with mental retardation.
Sounds like you agree with me. So I've learned more from you, a wit man.
good point!