Great Strides Walk to Cure CF

It is time once again for us to ask for help in raising money for Cystic Fibrosis! As many of you know, our daughter Bethany has a genetic disease called Cystic Fibrosis. CF affects over 30,000 children and young adults in the US and currently there is no cure. But with your help, I know we can make a difference.

We will be taking part in a walk to raise money for CF research. The walk this year will be June 7th around Six Flags in Arlington. We are asking for sponsorship to raise money for research for this fatal disease that Bethany has. The CF Foundation reports that over 90% of all donations for this walk go toward research for CF and was voted “Best in the Industry”. We hope you will consider sending a donation for this cause.

Cystic Fibrosis is caused by a missing gene in the DNA oddly causing exocrine glands to malfunction. This malfunction causes problems like sticky mucus in the lungs, insufficient digestive enzyme secretion, and excessively salty sweat. These various problems make a CF victim vulnerable to disease and degrades their organs which leads to a slow and painful struggle to survive. Most people with CF don't live past 35.

Bethany is now a Sophomore in high school and loves theater! Already she is a great actress! She has starred and taken part in many plays at high school, in Garland's local Theaters, and even in the Dallas Majestic. She always has so much fun and brings so much joy to all of our lives! We are very glad to report that Bethany and her health have been doing very well. She has had great checkups every year so far and appears to be living a healthy and relatively normal life. Health-wise, Bethany just keeps surprising us! Bethany has managed to stayed out of the hospital all but a couple of times since she was diagnosed 14 years ago. We never expected her to be doing so well and we are very thankful to the Lord!

Currently, Bethany takes 3 Aerosol treatments in the morning: Albuterol, Pulmozyme DNAse, and Tobi an aerosol Antibiotic, and two at night: Albuterol & sometimes Tobi. She also takes 5 digestive enzyme capsules at every meal to help her digest food and takes other various medications and super dose vitamins. These medications are very expensive costing over $5000 a month which would be nearly impossible without insurance and certain medication programs we do. There are many new and exciting medications in development! One genetic replacement therapy in trials would allow Bethany to only need to do one aerosol treatment a month instead of the several daily she currently does. Another drug in development called hypertonic saline would nearly nullify all of her lung problem symptoms. Other new antibiotics and digestive enzyme treatments are also in development that may help Bethany in the future fight disease!

As you can imagine the research and trials are very expensive. Please help us raise money for CF research to help our daughter Bethany! Any donation $5, $10, $20, $50, or more for this walk will be appreciated and will be a great help. This year, a convenient way to donate is to go to the CF Foundation's website http://www.cff.org and donate directly with a credit card! Please refer to Bethany Brown's Team in north Texas so that we will get the credit for fund raising. If you would like to pay by check or Money Order, please give generously and make payable to: Cystic Fibrosis Foundation. All donations are tax deductible and your canceled check will serve as your receipt. This is a prepaid walk, so we must have donations before June 7th to turn in the day of the walk. Our address is: Teresa and Jim Brown, 2326 Phoenix Dr., Garland, TX 75040. We are very excited this year because we know with your help new research can continue that may give Bethany a chance at a relatively normal life! Also, if we manage to raise enough, as a bonus Six Flags will graciously allow us free admission to to the park the day of the walk! Thank you in advance for your generosity and for taking time to read this letter. Words cannot express our continued gratitude for your support. You could be saving our daughter's life!

Sincerely: Natalie, Bethany, Teresa, and Jim Brown

Please Donate to CF Research:

Our daughter Bethany has Cystic Fibrosis. I'd like to tell you my story of my daughter Bethany and hopefully convince you to donate to the Cystic Fibrosis Foundation. It's a story that I wouldn't wish on any parent. It's little graphic and sad but I hope you'll read on to see why research for CF is so desperately needed.

When Bethany was very young, about 9 months old, she was always sick and we were constantly taking her to the doctor. She was frail, could hardly breathe, and was hungry all the time sometimes literally gulping up to 10 bottles of milk a day. This was not normal. We decided to switch doctors and our new Pediatrician knew children's diseases much better. He seemed to figure out the problem rather quickly over just a few visits. He sent us to the Children's Hospital CF clinic to have Bethany tested for CF on a Tuesday.

We almost waited until Thursday to go to the clinic because was more convenient for us but Bethany seemed really sick so we changed our minds and didn't delay. That Tuesday when we went, we were shocked to find out that she indeed tested positive for having CF, a very chronic illness. She was having trouble breathing and also had digestion problems so she was admitted into the hospital.

I guess we were naive and didn't think of it as a chronic illness and it was all new to us. So, we wanted more information so we went to the Library to find out what CF was, and unfortunately the Library had outdated information and told us she would only live a few short years! That scared us to death! It was quite a wakeup call but nothing to what happened next.

That night at the hospital, one of Bethany's lungs collapsed and they rushed her to the emergency room! It was a good thing that she was already at the hospital! We were so glad that we did not wait until Thursday for the clinic visit or she would have died. If she was at home, we would not have known her lung collapsed and she would have just passed away. She was in the ER for about a week which seemed like an Eternity.

Now here's where it gets really bad. While we were in the ER waiting area we watched as the Doctors came out occasionally and broke the bad news to parents that their child had died. Every time a doctor would come out of the hall and into the waiting area everyone would go deathly quiet like they knew what was about to happen. We just sat there in the waiting area stunned and waited for the docs to come out and talk to us about Bethany that same way. It will always be seared into my mind how one grandmother screamed and wailed when they told her about her grandchild. “NO, not my little cricket!” she yelled! I guess “cricket” was her pet name for her grandchild. Everyone there cried and tried to just to tell themselves it will be different with their own child but no one really knows. For several days we waited to hear news and for a doc to come out and the waiting room to go quiet, but no docs called out for us. That was a toughest waiting room to wait around in!

Bethany had her own ER room and was assigned her own dedicated super-nurse. I call them super-nurses because the ER nurses really knew their stuff and never left their patient's side, was constantly doing stuff to maintain their patient. There was a super-nurse always at Bethany's side around the clock. They kept Bethany in a comatosed state, intubated through every orifice, mouth, nose, etc, to where she looked like an octopus of tubes going in and out and she was sort of blackish purple puffed up like a balloon with medicinal fluids. It didn't even look like her. When my brother went in to see her he was so devastated that he came out, sat by himself and couldn't talk to anyone for about an hour. After that we were more careful to warn people before entering the room. Near the end, Teresa and I really didn't think Bethany would make it and when we went to visited Bethany's room, we just stood outside her room looked in the window and cried really hard. The super-nurse saw us came out and tried to console us and he told us that she would be OK.

We really found that we had prayer-warrior friends! Everyone we knew and many we didn't know gave us emails and notes and hugs to tell us that they were praying for Bethany – literally people praying for her all around the globe. We were very blessed to have so many calls and visits at the hospital from friends and family. They cried with us and prayed with us. It's silly but they even watched OJ Simpson flee in a Bronco with us. Yes, even that event happed during our ER visit. It was a good distraction.

Finally, back waiting in the waiting area, the doctor came out and they called out, “The Brown Family”, to see us. I just started crying right there because I was so afraid for her. The good news was that she would be OK. She would need a bood transfusion and some more time but she was going to be OK. It was such a sigh of relief. She was going to live. We count ourselves extremely blessed because we were one of the few families that had children survive during that horrible week. It was really a bad week for children.

The docs then brought her out of her comatosed state and let us hold her again. Bethany was then admitted into a regular hospital room where she slowly recovered. We could tell she had forgotten things because of her traumatic experience and she had to relearn. Bethany was a real trooper through it all, though, and she was always a happy baby.

Bethany is now a relatively normal 15 year old and has been a fairly healthy CF person, much more healthy than most with CF. Bethany has to take 3 different medicine aerosol treatments in the morning and at night and she also has to take many meds including and digestive enzymes at every meal. Her meds are very expensive, like over $5000 a month (maybe more). It's of course much more than we could afford if it were not for insurance. We were told that normal CF children will need to be admitted to the hospital at least once a year but Bethany has only had to be admitted into the hospital a couple of times since her initial ER event. She seems to be doing very well for someone with CF and we're very thankful for that.

People with CF usually have problems with digestion and problems with lung function. They say that people with CF loose 1 to 2 percent of lung function each year. When the lungs reach 30 percent loss, then it is very hard for someone with CF to get enough oxygen to survive so they need to get a lung transplant. After a lung transplant they last only a few more short years. So people with CF usually have diminished life span and quality of life.

The good news is that researchers in cooperation with the CF Foundation have many new treatments and drugs in development. These days, the average age of people with CF has increased from 5 years old to about 35 years old. We recently went to a CFIT (Cystic Fibrosis Information Time) all day meeting and found out some great things that the CF foundation is doing to help research and development of new medications for CF. Many foundations model themselves after the CF Foundation because it has been so innovative, efficient and so effective at bringing doctors and researchers together to better collaborate and they are better at allocating grant money, keeping doctors and patients informed, and generally they bring a lot of help to CF patients. They are helping with treatments such as Gene Replacement therapy, Hypertonic Saline therapy, and many other medicines and arranging patient drug trials. The CF Foundations reports that almost 90 cents per dollar raised goes directly toward vial CF research which is an exceptional amount for any foundation, so you know the foundation will not waste the money you donate.

Our family will be walking in a 5K Great Strides walk to help raise money for Cystic Fibrosis on Sunday June 7th. Please, won't you help the CF Foundation by making a donation to find a cure or to at least find better treatments for people with CF like my daughter Bethany? Any amount will gladly be accepted and appreciated! Will you please help and donate to the CF Foundation $5, $10, $25, or $50 or more? If you'd like to write a check, please make it out to “The Cystic Fibrosis Foundation” and mail to Jim Brown, 2326 Phoenix Dr., Garland, TX 75040. If you'd like to pay by credit card, you can go directly to http://www.cff.org and make a donation on their website. Please refer to Bethany Brown so that our family will get the credit for fund raising. Or, if you want to send a donation to my paypal account, I'll be happy to forward it to the CF Foundation as part of our fundraising. Just send funds via www.paypal.com to james_121 (at) yahoo.com and please include a note that it is to refer to Bethany Brown for CF Foundation fund raising.

Thanks.