Tuesday, January 29, 2019

The Gene Mutation

Hi,

One of the things I am learning about in my work with the research team at  NIH, is gene mutation. Gene mutation is an alteration in a gene in the DNA of a person that causes it not to function as it is expected to function. The result is usually a disease process or syndrome (series of problems) in the body that becomes problematic for the individual or family with the mutation.

I often feel like I have a life mutation. As a young person, I wanted nothing more than to have a normal life...ie, get married, have children, go to work and church and school events such as recitals, plays, and concerts. I wanted to watch my children play sports or cheer games. But that has not been my life. My children were basically taken from me, both of them, for reasons that still remain a mystery to me. I tried to always do right by my children. I guess that was the problem.

Perhaps I should have been selfish. To this day I feel robbed of my rights to be a mother and raise my children with my beliefs and moral standards. Who took that from me? A gene mutation? My right to live a normal life and function like everyone else was denied to me. A gene mutation. I never got to see my children on a school stage. A gene mutation. I did not get to attend their junior high, high school or college graduations.  A gene mutation.

It is difficult to adjust your body to abnormal function. Research is about finding a cure, a medication, a device that can replace the mutation so your body can function like everyone else's. But what can we do for a mutation in life and living? Is there research that allows me to now have the normal relationships and opportunities that I missed? What replacement is there for me?

How does a mother become a mother again after missing out on the most precious times in her children's lives?

Researchers, please answer this.

No comments:

Post a Comment