Thursday, February 18, 2010

Two of my Passions, Front and Center

Ironically in response to my last post on having more children when you are knowing carriers of a disease, last night our local paper featured an article put out by the Associated Press on just that. If you care to read this article you can find it here:

http://seattletimes.nwsource.com/html/nationworld/2011099346_gene17.html

I couldn't leave it without advocating, first for life and then for the Cystic Fibrosis Foundation.

Here was my response...
Editor, Daily Union:
I am writing this letter in response to “Tests curb some genetic diseases” by the Associated Press as featured on your front page. The second paragraph caught my eye: “Births of babies with cystic fibrosis…seem to have dropped since testing came into wider use…” As a mom to two children with cystic fibrosis I was thrilled to see those two words appearing on a front page newspaper article. We had never heard of the disease before our children were diagnosed so to see it in the “lime light”, I have to admit, was quite glamorous. But as I continued to read my excitement slowly diminished to anger then to complete outrage. While I can not speak for the other diseases mentioned in the article, I do know enough about cystic fibrosis to articulate what the reader was misinformed about. The focus did not highlight the amazing work of the Cystic Fibrosis Foundation, namely that it has raised life expectancy from 5 to 38 years in its 50 years of existence or that the foundation is considered one of THE best non-for-profits in the country donating 90 cents of every dollar directly to research. The phrase “severest form of cystic fibrosis” also puzzled me. From my research and very extensive education I have read and been told time and time again that each of the more than 1,000 mutations of cystic fibrosis affect persons on an individual basis. The most common mutation, the gene both my husband and I carry, Delta F508 is not a “one-size-fits-all” gene. It affects my son differently than my daughter, and differently than other patients we know with the exact same copies of the faulty gene. It is exactly the same in the case of different forms of cancer affecting each person differently. One patient may go into remission while another loses their battle. The only shred of decency in this contaminated article was the last paragraph on newborn screening. When our son was diagnosed in 2005, Wisconsin was one of 3 states that required newborn screening. Now 5 years later all states require it has routine infant health care. That should be the real headline because that is what truly is saving lives. Contrary to my values and beliefs, the article gave credit for this new decline in genetic disorders to abortion. Really? Saving lives? Do we not see an oxymoron in that concept of “saving lives” through the means of abortion? Our nation’s solution to this problem has been genocide. America is considered one of the more advanced countries in technology yet we continue to take the short cut to find a solution to what we deem a “problem.” We can and should hold ourselves accountable to the utmost dignity for all human life in medical advancement. Yes, I may be completely biased in my opinion because I care for children with a genetic disease, but when was the last time you heard someone tell you their “real” thoughts on caring for their special needs child? They don’t see the DISEASE they see a son, daughter, a sister, brother. Before our children were born I could have never imagined my life caring for special needs children. But now, I can’t imagine my life without them. They have taught us compassion, how to truly live each day to its fullest, and brought many people into our lives that we would have never been allowed to know had it not been for their illness. We would have never become involved in raising money for advancement of research, and for valid reasons since we didn’t have a personal connection. In all humility it is because of our children that we have been allowed the privilege of raising nearly $90,000 for the foundation in the past four years. My heart aches for those parents in the article that did not choose life, but rather death for their unborn child. They are really the ones missing out on an amazing experience. As a pro-life advocate and cystic fibrosis mom I want you to know that regardless of the way in which we “destroy” this disease we are not moving forward. We are only setting a path of self-destruction for the future generations. In an interview with Blessed Mother Teresa, a modern –day saint, was asked why God hasn’t sent someone to cure AIDS, cancer, etc. She said without hesitation that he probably already has but that child has been aborted. Who are we to say what these children could have potentially been? What they could have accomplished? My kids will hopefully live to see the day that cystic fibrosis is cured. In an article featured in USA Today in 2006, Pamela Davis, a professor at Case Western Reserve University who specializes in cystic fibrosis reported: "This is an exciting time. We're almost at the point of changing this from a fatal disease to a nuisance.” In more recent years, cystic fibrosis has been coined by researchers and doctors of the “medical miracle of this century.” The real headline should have been “Tests destroy people with genetic diseases.” Without living patients how will we continue to advance the lives of those that survive with diseases daily so that the medical field can continue to find better treatments and potentially cures? We won’t and we will have allowed ourselves to be sold again on the lie of abortion. Death will never bring life.



Tiffany Topel

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