I find a sudden urge for Fort Minor's hit single Where'd You Go as I wonder where my dear partner ANA has gone. Hurry and post banana! We're all waiting for you!

Serene here, by the way. And today I'll be posting about what happens when a person lacks the normal growth of their cystic fibrosis transmembrane conductance regulator. Take away the bombastically long name, basically the product of this gene helps create sweat, digestive juices, and mucus.







The story I am about to share was taken from "Stories for a Teen's Heart" which my grandmother's godson gave to me for Christmas around four years ago. It's called The Silent Flute, by Felix Mayerhofer.



One of the things I enjoyed as band director was recruiting new members. I'd enter a class at the beginning of a school year and ask, "Who wants to join the band?" Every hand would shoot up! Each student had an idea what he or she wanted to play: some the trombone or clarinet, others the flute, drums, or trumpet.

It took about two weeks for the kids and their parents to decide what instruments they wanted to buy or rent. When the day of their first lesson arrived, I could hear the commontion as the flute students scurried toward the band room. When I opened the door, they whizzed by me, found a seat and anxiously waited with great expectation for me to make them instant players.

I showed them how to blow into the hole of the top section of the flute. Going down the line, each student made a sound for me, until I came to a pretty but fragile girl. Her name was Jennifer. Even though she tried with the biggest breath she could muster, nothing came out.

"Don't worry," I assured her. "You'll soon be able to play." I had the students put the three parts of the flute together, then taught them how and where to place their fingers. At the end of the rehearsal, the kids left the band room as excitedly as they had entered, with the trumpets scrambling in next.

Besides their individual group instructions, the entire band got together once a week. As the beginning band improved, Jennifer was always there, but looking frailer as the weeks passed. She still couldn't get a sound, but her friends continued to encourage her. Jennifer knew the fingerings and did everything correctly, so I knew she'd been practicing. She was a sweet and patient girl. Since she'd made the effort to learn, I didn't pressure her.

After a rehearsal, I asked Jennifer to stay. "Jennifer," I said, "you don't seem to have enough energy to play the flute. Is anything wrong?"

With maturity beyond her years, she looked up at me with her big blue eyes and said, "I have cystic fibrosis and I'm going to die."

As tears clouded my eyes and a lump came to my throat, I asked with difficulty, "What is cystic fibrosis?"

"It's an inherited disease," she explained, "with a thick sticky mucous that clogs my lungs and airways, making it hard for me to breathe. My older brother died two years ago of the same disease, but luckily my younger sister doesn't have it."

"Why did you take up the flute since you have trouble breathing?" I asked.

In a small but determined voice, she responded, "I've always wanted to play the flute and love it, even though I can't make a sound."

I wanted to hug her as if she were my own child, and when she left, I sat down heavy haerted, having trouble holding back the tears.

As the weeks passed, Jennifer coughed and choked more, and during one of our rehearsals, her seat was vacant. I was told she had had a serious breathing attack and would be out for a few days.

When she returned to band, Jennifer tried playing the flute like she had never been ill. I began teaching the flute players three new notes. Each student played them for me to make sure they knew the fingerings. When I came to Jennifer, I decided to jump to the next player because the notes were higher and more difficult.

"I want to try it, too," Jennifer said softly. Lifting the flute with her delicate hands, she put the instrument to her lips, and out came three beautiful notes. I never saw a broader smile on a child's face, like she's been touched by an angel. There was stunned silence, then the band broke out in cheers and loud applause, and yelled, "All right, Jennifer!" It was a moment to be remembered.

We never heard her play again. The principal came into the band room the following rehearsal and informed us that Jennifer had died quietly in her sleep. There wasn't a dry eye in the band.

She left all of us with wonderful memories of her courage and what it was to never give up....Jennifer's silent flute will be forever missed."



I play the flute in the school band too, and I do know how hard it is to play the flute, or any instrument for that matter, should you encounter any respiratory illnesses. Apart, of course, from the loserish instances where we choke on our saliva in our anxiety to breathe quickly to 'catch' the next note, and cough violently, in the end resulting in the missing of the whole phrase of melody. Those loserish instances somehow always seem to find me.

But point aside, yes, sadly cystic fibrosis almost always causes death. Often, the only way to rectify cystic fibrosis is lung transplantation as the situation worsens. Most individuals with cystic fibrosis die young, often in their mere 20s and 30s.

1 out of every 2500 children is born with cystic fibrosis, and cystic fibrosis is easily one of the most common fatal inherited diseases around. However, Wiki says people without cystic fibrosis are born with two working copies of the cystic fibrosis transmembrane conductance regulator, while only one is needed prevent the disease itself.

I wonder then if it would be possible to create a sort of 'vaccine' against this disease. Cystic fibrosis can be detected at a rather early age, prior to birth through genetic testing or in early childhood through a sweat test. Since there is much potential for a child's body to adapt to changes in the early stages of life, and with our current technology of stem cell research, I suppose the answer to cystic fibrosis' deadly questionaire could very plausibly be found in the near future.



My idea of that answer would perhaps be introducing foreign cells, genetically altered for it not be rejected by the child's body, or perhaps cells from the unaffected parents or siblings to reduce chances of rejection, little by little, until the child's body is fully adapted to the new cells.

I do suppose it would again, like my last theory on combatting serine-deficiencies, potentially clash with our stand on bioethics. Against this debate between religion and a hope for a better science, I hope to find a midpoint somewhere, accepted both by religion and Science.

I suppose religion would state everything happens for a reason, and that God has plans for everyone. And after people who are true inspirations - Stephen Hawking, Helen Keller and the likes, I suppose anyone could achieve, should they believe in themselves, despite any physical disabilities.





And yet, in all the splendour of my secure life of air-conditioned rooms and comfortable beds, I cannot possibly fathom the feeling of living a life, cradled in the arms of the Grim Reaper each day. It would be as Jewel the unicorn put it so aptly in C.S Lewis' Chronicles of Narnia, it would be as if you drank water, and it were dry water, or if the sun rose each day, but it was a dark sun.

Life wouldn't be life, would it?

Sometimes I think I take my life for granted.

too beautiful ;
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