Jamie Kellis was a short
girl with long blond hair. I was amazed when I first saw her because she was
shorter than I was and that was hard to come by. We met while attending the same
high school. We were both freshman and where I come from; freshmen are the “runts”
of the school, so they get made fun of and picked on a lot.
We both had English class
together. One day, this mean 10th grader started picking on me. Apparently, she knew him so she told him to shut up and leave me alone or she would make sure that he had
a hard time talking again. She was a short girl, but had a lot of friends and
some of them were the type that they would do anything to help Jamie out.
From there, we
started talking and developed a close relationship. I always noticed that her
fingernails were oddly shaped, but I never questioned why (this is a symptom of Cystic Fibrosis because enough oxygen does
not get to the fingertips). During a few discussions while “hanging out”
with our friends, the topic of her “sickness” would come up and she would tell everyone to just shut up and leave
her alone. She knew what she was doing.
One day, I asked
Jamie what her “sickness” was. She told me it was a disease called
Cystic Fibrosis and explained to me that it is something like having a cold and when your chest is congested, but for people
with Cystic Fibrosis, that “congestion” never goes away. She did
not tell me that it was a fatal disease and I was young and naïve so I did not question her any further. This was the first
time I had ever heard of it and I never asked her anymore about it. Jamie was ALWAYS getting her pictures taken professionally. One time, when she gave me another new picture, I asked her why she got her picture
taken so much. All she said was because she wanted people to remember her. During our 10th grade year, we drifted
apart a little bit because we did not have any classes together. We continued to stay close friends.
As the summer between our
sophomore and junior year started, Jamie and I began to get close again. I recall
this memory very clearly. Jamie had invited me to come and stay the night with
her at her mom and step-dad’s house. I had never spent the night with Jamie
before. The minute I met Jamie’s mom, I loved her to death. She was so different than my own mother. She let Jamie do
things that my mother would have never dreamed to let me do. Now looking back on that, I know why she did. She let Jamie do things that most teenagers were not allowed to do because Jamie’s mom knew that
her daughter would not live forever, so she wanted her to have a chance to experience life and all it had to offer, even if
some of those things were not good for her.
That night, Jamie and I grew
closer as friends. We invited some of our mutual friends over and just hung out and talked, laughed and had a good time.
Through the years, after
graduation, Jamie and I still remained good friends. Jamie was at all the “major”
events in my and my daughter’s life. She attended my wedding; she came
to my daughter’s birthday parties, etc. After I got married, Jamie and I drifted apart.
I think mainly it was because our lives took different paths. We still
stayed in touch, but did not spend as much time together as I wished now that we would have.
Jamie had gotten married as well, but had also gone thru a divorce. I
always asked her when/if she was going to have children while she was married. She
would never say too much, just smile and put her head down and shrug her shoulders.
After talking with Jamie’s mom, I learned that it was not that Jamie didn’t want to have children because
she knew she would not be alive long enough to raise them, but because women with Cystic Fibrosis can’t get pregnant.
As the years went on, I learned that she was engaged again to a guy that she
had worked with. Their wedding was planned for a week after she passed away.
Jamie died on
October 10, 1997, five days after her 26th birthday. About a week
prior to her death, our mutual friend, Jackie had gone looking for me at my parent’s house. When she told me that Jamie was sick and in the hospital, all I could do was cry, it hit me like a blow
to the stomach. I wanted to go see her at the hospital, but Jamie would
not allow any of her friends to see her that way. Her mom took Jamie to her house
and over the next five to seven days, Jamie deteriorated more and more until she just could not fight any longer.
Cystic Fibrosis is a disease
and there is currently no cure for it. It is a genetic condition that involves
glands found throughout the body. It can affect many different organs. Symptoms frequently involve the lungs and digestive system. Obstruction, infection and inflammation in
the lungs are among the most common characteristics of CF. In CF, thick mucus
in the lungs obstructs airways and allows bacterial infection and inflammation to occur.
White blood cells called neutrophils are sent to fight these infections. When
the neutrophils die, they release DNA and elastase, which further thicken the mucus and cause additional airway obstruction,
infection and inflammation. CF affects
approximately 30,000 people in the United States.
CF is a genetic
disease, which means it has to come from the parents.
The
defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must
inherit two copies of the defective CF gene—one copy from each parent. If both parents are carriers of the CF gene (i.e.,
they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and
having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having
CF or carrying the gene.
The symptoms of Cystic Fibrosis
are:
- Very salty-tasting skin;
- Persistent coughing, at times with phlegm;
- Frequent lung infections;
- Wheezing or shortness of breath;
- Poor growth/weight gain in spite of a good appetite; and
- Frequent greasy, bulky stools or difficulty in bowel movements
Jamie’s
death was very devastating to me. But it helped me to learn to take each day
and savor everything life has to offer and to remember to tell my friends and family that I love them as much as I can because
I never know when they won’t be there anymore.
