Friday, August 13, 2004

And finally, I wanted to post the letter I sent out, just so it's there to read....

August 10, 2004

“Run, Daddy, run!”

That’s what my son, Jacob shouts to me when we’re chasing his older sister, Sophie down the street. While Sophie pedals away on her two-wheeler, Jacob’s little arms pump and his legs gallop in red, scuffed up hand-me-down cowboy boots. It’s at times like these that I’m filled with hope that his little body will continue to be strong and that his lungs will remain healthy.

It’s been a year since I first wrote most of you about my marathon fundraiser. Last year, I trained for the Honolulu marathon and raised over $11,000 to help combat Cystic Fibrosis, the deadly illness that afflicts 33,000 children and adults in the United States alone; the deadly disease that inhabits my precious son’s body.

Cystic Fibrosis (CF) causes the body to produce abnormally thick, sticky mucus often creating potentially life threatening lung infections, as well as a host of other problems throughout the body. Jacob also has a great deal of trouble with his digestive track due to CF. Because the thick mucus blocks his pancreas; he takes digestive enzymes every time he eats in order to absorb the nutrients from his food. On an average day Jacob takes oral medication 10 times as well as having nebulizer breathing treatments 3 times daily to help keep his lungs healthy. During those treatments he wears a special vibrating vest that helps break up the thick mucus that clogs his lungs.

Cystic fibrosis is a progressive disease so we must do all these things to keep Jacob healthy. Although the gene for Cystic Fibrosis was discovered in the early 90’s and much progress has been made since then, currently there is no cure for the disease. One half of the individuals with CF live into their 30’s; however, the other half does not.

These are the dreaded statistics we live with as a family. Of course, you can’t dwell on the facts or you’d never be able to function. But the details about CF are always there, hovering like a black cloud. Most days, I fear that Julie bears the brunt of the responsibility for Jacob’s illness. She is home with him while I go to work and she administers most of his medications and does the majority of his breathing treatments. I don’t know how she keeps it together. If it was me, I would be in tears most of the time. As it is, whenever I drift to that place in which the specter of CF grips me, I walk around in a haze, struggling to stay strong.

I would trade all of the good fortunes in my life to find a cure for my son. I would use every ounce of my energy to help rid the world of CF. But I am not a doctor or a scientist. So I must do what I can… what is within my capabilities… to raise awareness and money in the battle. So, I have decided to undertake another marathon. On December 5 of this year, I will use every ounce of my energy to help find a cure and raise money by participating in the Orange County Marathon, here is sunny Southern California. But I need your help.

As I said, last year I raised a lot of money, and this year I have raised the bar. I’ve set a goal of $15,000. It’s a large goal, but it’s one I believe can be reached. Like last year, it’s my hope that anyone receiving this letter can make a donation of $50.00 or more. Those of you who donated last year, I’m asking you, can you spare ten or twenty dollars more? Or perhaps you have family or friends who would be interested in helping that crazy father in California who insists on punishing his body for a good cause. Of course, any donation I receive will be appreciated from the bottom of my heart. I pledge to all of you that I will dedicate the next five months of my life to making you all proud. And when I reach that finish line and find my children cheering for me, I’ll lift them in my arms and carry them with me.

Please make checks out to: The Cystic Fibrosis Foundation and mail them to me at:

Scott Malchus
22331 Los Tigres Dr.
Saugus, CA 91350

Or, you can go online and donate at this web address:

I need any donations by the end of November. Your cancelled check will serve as your receipt.

Last year’s marathon was a bit overwhelming. Besides being one of 6 people running for CF, it was incredible to be swept up in the mass of 20,000 people. The Orange County Marathon will be smaller and with the CF Foundation on all of the literature and t-shirts, I believe this race may be a bigger challenge. Each step I take won’t be for me, but for Jacob… for his life and future. He is such a sweet loving boy and we are blessed that he has been healthy his two years of life. He deserves to have a life like you and I. A life without the fear of hospitalization or worse. A life without Cystic Fibrosis.

As I train and eventually run the marathon, I know I’ll have to dig deep to find the energy to complete the grueling task. The energy will be there, though. It will come from the sound of my darling Julie and precious Sophie cheering me on. And it will come from the spirited voice of my beloved Jacob, shouting to me, “Run Daddy, run!”


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