Code Word Courageous

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Young. Its the one word thats so difficult to get past. You start by saying: This should never happen to someone so young And then you just start to shake your head and maybe wipe your eyes. The thought may be completed in your mind, but it never translates audibly.
 
Young inspires so many other words: energy; hope; smiles. There are several others that come to mind; however, fair is not among them. Fair is a word that has little belonging when discussing most any aspect of life.
 
Life certainly hasnt been fair to University of Florida golfer Mallory Code. Not that she has ever complained, or harbored contempt, or ever shook her fist towards the heavens.
 
Right now Mallory and her family ' and the hundreds upon hundreds of friends and strangers on a prayer list ' just want the 20-year-old college sophomore to be able to breathe without mechanical aid, before her body comes to rely on it.
 
Mallory Code lies in a bed in The Childrens Hospital in Denver, Colo., where she has been since Feb. 7. She is fighting pneumonia, Adult Respiratory Distress Syndrome (ARDS) and a massive yeast infection in her blood stream. A ventilator pumps oxygen into her lungs.
 
Mallory has cystic fibrosis.
 
Doctors say that the life-threatening problems she now faces are unrelated to CF; though, the disease certainly has complicated matters, as has her diabetes.
 
Yes, Mallory has diabetes as well, and asthma, both byproducts of CF.
 
A mass e-mail is sent out when updates are available on Mallorys condition. The To list on that electronic message looks like a small town, numbering in the hundreds. And that doesnt include all to whom the update is forwarded.
 
Mallory started to really struggle with her health in the fall of last year. She was diagnosed with pneumonia in September and had several admissions to Shands Hospital in Gainesville, Fla., over the following four months.
 
Finally, in February, she was transferred by helicopter to Colorado, where she was diagnosed with malnutrition, due to persistent nausea, and a lung infection.
 
Things only got worse from there, as she was found to have a yeast bacteremia and was soon diagnosed with ARDS. She was placed on a ventilator in the Intensive Care Unit on Wednesday and will likely remain there for 'at least several weeks and possibly longer,' according to the latest update.
 
Doctors originally estimated her chance of surviving this episode ' which varies day-to-day ' at 70 percent.
 
'Last night, after scaring us to death with possible problems that can arise, they have given her an 80 percent chance of getting through this long ARDS situation,' Mallory's father said in Thursday's e-mail.
 
Mallory is one of about 30,000 people in the U.S., according to the Cystic Fibrosis Foundation, who suffers from CF. Its a genetic disorder which causes the body to produce abnormally thick, sticky mucus that leads to chronic and life-threatening lung infections and impairs digestion.
 
Cystic fibrosis has always been an uninvited and unwelcome resident in Mallorys body. She was diagnosed with the disease just six weeks into her life.
 
Can't Live Your Life in a Crisis
 
Mallory opens a closet door. It stands about two times her 53 frame, with shelves stacked to the gills with two-months-worth of medical supplies.
 
This was a couple of years ago, when she and her family opened their doors to allow a glimpse of life with CF.
 
CF, like so many other diseases, not only affects its personal victim; it does so to everyone with an emotional bond to the stricken.
 
Mallory has two siblings ' older brother Jordan (24) and older sister Whitney (22). All three were home schooled by their mother, Karen, a registered nurse.
 
When you have CF, youre susceptible to so many other illnesses. Even a cold cant be considered common. Mallory became quite ill on more than one occasion when she was attending a daycare center as a child. Precautions and sacrifices had to be made.
 
But Mallory hasnt lived a sheltered life. She has many friends. Shes traveled extensively. She loves to dance ' ballet and tap. And she loves to play golf. And shes very, very good at it.
 
Her mom and dad first met on a golf course. Her father, Brian, talked about taking the kids out to play on Sundays after attending church.
 
It gets very competitive, he said at the time with a proud smile. 'Who won? Well, that depends on who you ask.'
 
Jordan graduated from the University of Florida, where he was a member of the golf team. Whitney is senior for the Lady Gators. Mallory followed in their footsteps.
 
Mallory was 3 years old when she first remembers playing. She was 6 when she competed in her first tournament. It just got in my blood right away, she said.
 
Mallorys junior accomplishments are immense. She won several prestigious American Junior Golf Association titles, including the 2000 AJGA Rolex Tournament of Champions. Shes been honored with numerous personal awards, many of which have Courage etched on the trophy or plaque. And she has spoken around the country on behalf of the Cystic Fibrosis Foundation.
 
Her sporting talent, however, is exceeded by her personality, which is equal parts engaging and infectious.
 
I would say that were very proud of the person that (Mallory) is, her dad said. The fact that she plays golf well is really the gravy. Wed be just as proud of her if she couldnt break 100.
 
Mallory smiles an honest smile. Its not there to deflect pain. There is no facade.
 
'She's like that 24/7, all the time,' Whitney said. 'She has a really strong character.'
 
When Mallory recalled one of her favorite golfing moments, she lit up. Playing in the Canon Cup with my sister, she said. We always talk about how neat it is that we not only enjoy the same sport, but that we both play competitively.
 
Mallorys golf bag looks like a drug store with a shoulder strap. I could probably start my own pharmacy, she said with a laugh, punctuated with a giggle.
 
On a good day, this being a few years ago, she would take more than 40 pills a day. When sick, her intake was upped to over 60. She also had to inject herself six to 12 times a day with insulin due to the diabetes, before getting an insulin pump.
 
Then there was the ABI machine, which she referred to as the 'shaker.' She would strap on the padded vest which was filled with air. It would massage her chest to help clear the mucous. This would take about an hour a day.
 
Scientifically speaking, it knocks the junk out of my chest, she said.
 
Her parents did this manually for 15 years, beating on her back and chest like bongos to help break up the congestion.
 
If you met Mallory in passing you might never imagine that something was wrong. Certainly plain sight never gave anything away. And if she didnt talk about her illness, it wasnt because of shame; it was because she just wanted some sense of normalcy. Why talk about such things when you can discuss golf and boys and everything else?
 
Mallory said she takes very little in life for granted. She talked about playing an important junior event in Orlando, where she missed the cut. It was quite disappointing.
 
Then three weeks later I was in the hospital and I couldnt play golf at all. And I started to realize how wonderful it was just to be out there playing at all, she said.
 
Mallorys mother has a saying: You can be in a crisis, but you cant live your life in a crisis.
 
Its the family mantra.
 
Right now, at 20 years young, Mallory Code is fighting for her life. Against a genetic disorder over which she has no control. Against a disease that has made her body its home and has left the front door wide open to all other intruders.
 
Mallory is heavily sedated most of the time in her current state, and when she is conscious, she is unable to speak because of the ventilator down her throat. She nods and squeezes hands to communicate. She eats through a feeding tube.
 
ARDS has presented yet another long-term problem for Mallory and her family. According to her latest update, it may take upwards of three months to make it through the initial stage, and afterwards 'she will need additional care and rehab, to regain her strength, for (we are guessing) 6-10 weeks.'
 
Karen, who has spent only one night in their home since early January, plans on staying in Denver full time with Mallory, while Brian must now commute in order to continue his work.
 
'Her doctors have agreed that I should go home in the near future,' he said. 'It looks like we will be accumulating a lot of frequent flying miles.'
 
This most certainly is not fair to Mallory or to anyone in a similar situation. And one can't begin to imagine the thoughts that must race and crash inside her head.
 
But Mallory has never stopped to examine her life in terms of fairness. Shes always viewed life through that youthful outlook ' with energy, hope and smiles.
 
I look at my life; Ive been blessed in so many ways, she said a few years back. I have incredible parents. I have a wonderful brother and sister. I get to play golf and dance. I have so many wonderful things in my life, and this is the one thing that isnt right. Theres no reason to complain about this.
 
'I'm not trying to find the silver lining in the clouds. I really have been blessed.'
 
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