Health Care, 65 Roses and A Prayer

Last year a local news station made a video about a day in the life of my niece, Aubrey Rose. At the time, my niece was an ambassador for Cystic Fibrosis, an incurable disease that she and her family must deal with every day of her life. This emotional video http://www.wftv.com/video/17788642/index.html) shows that life is difficult and the future uncertain for the whole family.

I mention this because in the current discussions of health care I wonder how the government’s plan for health care would affect charities and those with chronic illnesses? There’s been a lot of talk about how the elderly will be treated, but what about those like my niece, Aubrey Rose? Will the government continue to allow her to get expensive medications, participate in clinical trials or go to specialists, particularly if there isn’t a cure? Who will make these decisions? Today it is between you, your doctor and your insurance company. Do you want to have the government become a part of these painful, emotional decisions?

If we had national health care then I could easily see how the government would feel it is looking at the “big picture” and using your dollars to provide the care that would benefit the most. They might ask - is it fair to spend all this money on one child when there is no cure for her disease? Hell yes, if it is your child! And can’t you just see the health care panel denying a CF teen a new lung thinking that she will probably die in another 10 years so let’s give the lung to someone with a longer life expectancy. Wow. This is not what America is all about. A cost-benefit approach is an awful path to go down and we must never take even a first step in that direction. For didn’t some other governments start off with just this kind of questions? First, it was the mentally ill and chronically ill but it went on from there… And even in America, how far might this line of questioning go and where might it lead us?

As I said in the beginning, I am writing about this not only as a concerned citizen but also as “Aunt Patti”. My niece, Aubrey Rose, was diagnosed with Cystic Fibrosis a few days after she was born. The family was horrified to learn that there is no cure and she was destined to have a difficult and shortened life. In fact, right now her life expectancy is only 37 years old. Can you imagine all that you have done or might miss in your forties, fifties, sixties and even seventies if you were to die in your mid thirties?

Yet my niece is lucky that she was born in America. If she had been born in Ireland, where there is national health care, her life expectancy drops from 37 all the way down to 27! CF patients have ten years taken from an already shortened life because of the lack of care in a country with socialized health care. This should be a huge warning to our country as to the detrimental impact of socialized health care.

Of course, one way to avoid the whole nationalized health care problems is to be healthy. To that end, a lot of people are working very hard to find a cure for CF or to at least give CF patients the means to live a healthier longer life. And we are working hard, too, through our annual 65 Roses Golf Classic. When Aubrey was diagnosed we decided that since government doesn’t give a penny to help the CF Foundation then my family would raise money to help find a cure. But unlike other charity functions which raises money, every dollar donated would go to the CF Foundation and not to some dubious “Trust Fund”, plus 90 cents of every dollar donated to the CF Foundation goes straight to research and not to exorbitant salaries or fancy trips. So you know when you donate money that it is going to truly help out.

Eight years ago my family, friends and the Orlando Chapter of CF started the 65 Roses Golf Classic. About 6 of us worked hard to put on this event but it is worth the effort as we have raised tens of thousands of dollars each year for the CF Foundatoin. Now it’s time for the next tournament. But we need your help. The economy is making it tough on all charities, including our own event. Yet if we help each other than there will never be a need for government to step in. Now that is what America is truly all about – people helping each other without any government interference. And here is how you can help us raise money to find a cure for CF…

If you live in Central Florida, we would love if you could join us at our 65 Roses Golf Classic in honor of Aubrey Rose to be held on November 23, 2009 at the Heathrow Country Club in Lake Mary Florida. Many of our golfers return each year for the golf, great food, drinks, good auction items and for the overall comradery of the group. Plus as a special treat, before the tournament begins, the golfers also enjoy a clinic by professional golfer Chris DiMarco. That is just the start to what is always a fun and rewarding day. Click on this link for more information http://orlando.cff.org/65rosesgolf .

If you can’t be here, you can still help out by giving a donation to this wonderful cause. Your donation, no matter the size, is important since every single dollar is making a real differenced in the search for a cure for Cystic Fibrosis. My family and I would appreciate whatever your budget allows, be it your charitable donation of $10, $25, $50 or $250. Plus this donation is 100% tax deductible. To donate to the 65 Roses Golf Classic to help find a cure for CF, click on this link www.cff.org/lwc/auntpatti.

Aubrey Rose is smart and funny and sweet and stubborn, in other words just like most kids her age. Except as you saw in the video (http://www.wftv.com/video/17788642/index.html) her life is different from her classmates. Yet she deserves, as does every CF child, to have a long and healthy life. And it is up to us to help her do just that. So please, help us find a cure for Aubrey Rose and the 30,000 others with Cystic Fibrosis by donating to our 65 Roses Golf Classic at www.cff.org/lwc/auntpatti. And join me in my prayer for my beautiful niece, Aubrey Rose; that some day a cure is found so that that this terrific little girl who is just starting second grade, will live a long life and will die of old age surrounded by her children and her children’s children in the far far future. Wouldn’t that be wonderful?