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D. A. Wolf

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The Butterfly Effect: Making A Difference, One Life At A Time

Posted: 11/23/2011 1:32 pm

In the small town of Sanford, North Carolina, a community is watching one of their own, closely.

The fact is, without a kidney transplant, 31-year old Ashley Quiñones will die. Dialysis, which is a viable long-term option for many, isn't an option for her. Though her donor has been cleared and ready to go for the past two years, Medicaid -- Ashley's only insurer -- will not fund the surgery, estimated at $250,000.

Ashley has appealed once and been rejected, though another appeal is on the horizon. But the longer she is required to wait, the darker the outlook.

Women Making A Difference


Several months ago I read Barbara Hannah Grufferman's article reminding women of our power to create positive change. I was inspired by Barbara's words, and the necessity for women to stand up and take action -- to use our energy, our skills, our time, our dollars, our grassroots campaigns -- and our hearts. Oddly, I thought of the Butterfly Effect -- the principle that one seemingly inconsequential act may spark far-reaching consequences.

I was already accustomed to writing daily; I began to write more frequently on health care-related topics.

As a result, Ashley's story came to my attention, and over recent weeks, a growing number of women have been writing about her life. In attempting to put a face on the health care crisis and make it more personal -- because it is personal -- some of these women are crafting Five Year Plans, musing on their futures so that we, in contrast, will imagine not having one.

Grassroots Efforts Are Powerful


I believe in service. I believe in the flutter of the butterfly's wings and its extraordinary ripple effects. I believe in each decision to stand up and exert influence -- for the better. I am reminded of this lesson not only by Barbara's call to action, but as I consider Ashley's family, fighting to save her life.

As of mid-November, the Quiñones family had accumulated just over $16,000 toward Ashley's transplant. In the past ten days, burgeoning grassroots efforts combining blogging, Facebook, Twitter, and email have raised another $8,000. It's worth noting that fundraising for Ashley is coordinated through the Children's Organ Transplant Association (COTA), a 501(c)(3) charity dedicated to assisting transplant-needy patients.

In Ashley's case, as encouraging as the latest efforts have been, it isn't enough. Or rather, it isn't fast enough, with more than $200,000 still to go and time closing in.

Ashley's Story


Ashley was born with Cystic Fibrosis, which is considered a "pre-existing condition" and disqualifies her from purchasing medical insurance at an affordable rate. Medicaid is her only option.

To be clear, Ashley underwent a life-saving double lung transplant in 2001. But the medications she takes to keep her lungs healthy place a tremendous strain on her system -- specifically, her kidneys. Her lungs are showing wear (and a condition known as Bronchial Obliterans Syndrome (BOS)) which is why Medicaid is denying surgical coverage despite her doctors' conviction that she will do well if she gets a kidney soon. In fact, they anticipate another ten years of quality life -- at least. And everything's in place for the procedure -- except the money.

Despite dealing with a lifetime of medical interventions, Ashley works two jobs: one teaching English to non-native speakers at the local community college and another as a developmental aid to a child classified as "severe profound." Known for her sense of humor and adventure, Ashley dreams of using her theater education to help disabled children through drama therapy.

She has no Five Year Plan, yet she does have a vision for her future.

The Giving Time Of Year

As a woman, I am proud to belong to a community of readers and writers who are thoughtful and compassionate. I'm convinced that we all want to make a difference -- but we don't always know how.

Here is one way: As you're giving thanks and holiday shopping, consider the Butterfly Effect -- how a small token can change a life -- or save a life.



Image of Ashley Quiñones courtesy of Quiñones-Miller family and COTA.org.

 

Follow D. A. Wolf on Twitter: www.twitter.com/BigLittleWolf

In the small town of Sanford, North Carolina, a community is watching one of their own, closely. The fact is, without a kidney transplant, 31-year old Ashley Quiñones will die. Dialysis, which is a...
In the small town of Sanford, North Carolina, a community is watching one of their own, closely. The fact is, without a kidney transplant, 31-year old Ashley Quiñones will die. Dialysis, which is a...
 
 
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HUFFPOST BLOGGER
D. A. Wolf
Founder, Daily Plate of Crazy
02:54 PM on 12/02/2011
And sometimes the news can turn for the better. The "little guy" wins. In this case, her life. Please see the latest update at the following post, as Medicaid reverses its position.

http://themillermix.blogspot.com/2011/12/joy-rising.html

There remains money to be raised, and for those who wish to donate, I encourage you to do so here: http://cota.donorpages.com/PatientOnlineDonation/COTAforAshleyQ/. What better holiday gift for your loved ones? And Ashley needs her kidney for Christmas.

As her sister says so eloquently in the post I reference above, "There are so many others struggling under the weight of our broken health care system."

Let's do what we can for each other. Let's do *everything* we can for each other.
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see-ellen2001
11:48 AM on 11/25/2011
I think it is time to change the name of insurance companies. They are now to be called 'we take your money and watch you die' companies.
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01:21 PM on 11/24/2011
Donated proudly and shared with all I know.
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D. A. Wolf
Founder, Daily Plate of Crazy
02:14 PM on 11/24/2011
Thank you, @Madgew! And a beautiful Thanksgiving to you and yours!
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kristiemaureen
Never let the hand you hold, hold you down.
11:27 PM on 11/23/2011
I can't believe I've never heard of the Butterfly Effect until now - especially considering my chosen image here (and that I use frequently elsewhere)! What a beautiful visual to help describe how much power we as women really do have. Power to help Ashley, and the thousands of other Ashley's out there. Thank you for sharing this.
04:29 AM on 11/24/2011
I have a great clip I received via a good friend about the buterfly effect as a matter of fact I just remembered I have a couple that are very nice, I will post the links here, perhaps you will enjoy them :)

http://www.youtube.com/watch?v=KzU3H7E0DO8&feature=channel_video_title

http://www.youtube.com/watch?v=QeXvtz0_Ex0&feature=channel_video_title
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D. A. Wolf
Founder, Daily Plate of Crazy
11:10 AM on 11/24/2011
Thank you for the links, @ruthnews - and have a wonderful holiday!
05:56 PM on 11/24/2011
Those are great links ruthnews. Thank you for shaing them. Here is another youtube video that also explains the butterfly effect.

‎1997 Good Will Hunting - The Butterfly Effect
http://www.youtube.com/watch?v=l8rQNdBmPek
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D. A. Wolf
Founder, Daily Plate of Crazy
11:09 AM on 11/24/2011
Thank you for reading and commenting, @kristiemaureen. It's a lovely visual, isn't it? While frequently applied in the context of physical (scientific) phenomena, I think it's an ideal metaphor for the way our lives all connect, whether or not we realize it.

We do indeed have enormous power as a community. The more of us who lend a hand, the stronger we all become.
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yintwin
09:57 PM on 11/23/2011
The power of women to take positive action! There is so much to be done, and it can start with a whisper in the ear of the person next to you. This story is just a drop in the ocean of how we as women can change our society by defining what it is we need from society! At this point, I think most of us are a long way from wanting a new pair of shoes or a new coat! We've been there, done that, and look at where greed and decadence has gotten us! It's time to start a network of helping each other. We keep choosing money over humane conduct,- time to change this attitude
01:43 AM on 11/24/2011
Hi Yintwin I absolutely agree with you that our basic human nature is built upon self love and so we are egotistical selfish creatures. Im not sure we are continuing our evolving development in this direction on purpose, or perhaps we are and it will lead us into a new direction of conscience based behavior attitudes and participation in society. After all we are all influenced by our environments, and seeing as how we live in a consumer industrialized very unstable world where billions are spent just for marketing strategies, we cannot blame people for being brainwashed into thinking that buying a new coat or some amazing make- up, car, or whatever will fill up the empty spaces in side ourselves and buy us this word called "love". The more that we run to fulfill our endless desires we see how much emptier we feel. Yes I believe in general that women can sense this on a larger scale and can help to make positive influence on a large scale to help shift our world to a more balanced foundation.
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D. A. Wolf
Founder, Daily Plate of Crazy
11:13 AM on 11/24/2011
It is just a drop in the ocean, @yintwin. Sometimes what needs to be done seems overwhelming, doesn't it? Perhaps that's why we need to start with one life at a time, one positive act at a time, and then keep going.

I hope you share this story, and encourage others to give in the ways that they can - to those who need help. I know that there have been many who helped me when I was struggling. I will never forget their kindness.

Attitude is so critical, but as Barbara Grufferman reminds us in her words, over and over again - we need to take action.

All best for a wonderful holiday.
08:01 PM on 11/23/2011
Maybe I'm missing something, but Ashley's family should not have to do a fundraiser to pay for a kidney transplant. End-stage renal disease requiring dialysis or a transplant can make Ashley eligible for MEDICARE (at ANY age). Medicare WOULD pay 80% of the cost of a kidney transplant--and Medicaid might pay the 20% balance. Ashley would be eligible for Medicare if she has worked enough quarters for Social Security. The transplant social worker can look this up...

I've also never heard of a reason why dialysis would be impossible for someone who's never done it. Sometimes people run out of veins that can be used--but after doing dialysis for years.
10:07 PM on 11/23/2011
Often, people who have respiratory issues can be locked out of future lung transplants if they're on dialysis, especially if they struggle with vascular issues.

Also, Medicare would be an option for someone who doesn't require up to $6,000/month in prescription drug costs (such as post-lung-transplant patient). Going on Medicare helps with the surgery, but would leave someone responsible for all costs after the threshold. It's commonly called "the donut hole."
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Barbara Hannah Grufferma
author, The Best of Everything After 50
07:13 PM on 11/23/2011
Thank you for sharing this story, D. A. . . . and I hope many, many people read--and respond to--your message of thanksgiving.
I will share . . .
Barbara
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D. A. Wolf
Founder, Daily Plate of Crazy
11:14 AM on 11/24/2011
Thank you for sharing, Barbara. And, as always, for reminding us to stand up and speak our minds, and to act on what we know is right.

Have a wonderful holiday!
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NokomisMichelle
I write about what others try to forget. Formerly
03:16 PM on 11/23/2011
"Pre-existing condition"-----> DEPLORABLE. The insurance companies should be hanged. Still, there is the matter of payment, even directly, for the doctors, the organ, the after care and rehabilitation, the medication. Without the insurance companies getting in the way, the way is still VERY expensive. But we as a country have the ability to do something about it. That's why I wish people would stop crying "Socialism" every time they hear about universal health care. What's wrong with a continuing community collaborative that guarantees situations like this don't arise. Not everybody has enough time to raise the money from private donors. We, as a collaborative, can do better.
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D. A. Wolf
Founder, Daily Plate of Crazy
11:17 AM on 11/24/2011
I like your concept of communities in collaboration. But it is difficult to mobilize people - we're all so busy and overwhelmed with "getting by" once we're juggling jobs and kids or kids and looking for jobs... Still, we can do better as a country. SO much better. There are many models of health care we could consider looking at. Where the care is excellent, the cost significantly less than the per capita cost in the US, and those who are offended by the term "socialism" won't hear it.

How about health care and education as basic human rights? AND - good for our country, by ensuring that its citizenry is healthy and contributing?

Thank you for reading and commenting - and please share this story.

All best for a wonderful holiday!
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NokomisMichelle
I write about what others try to forget. Formerly
12:38 PM on 11/24/2011
The reason why medicine costs so much has less to do with how much it HAS to cost and how much we've decided to charge for it; and we should be ashamed. OH- as for liability insurance- GONE! Simply done. It's ridiculous and patients were taken better care of before it existed because doctors weren't afraid to do whatever necessary to help them. Something that you said struck me as the corner stone of our current problem "we're all so busy and overwhelmed with "getting by" once we're juggling jobs and kids or kids and looking for jobs"- it's a mind set that I have and most people between the age of 5 and 50 have today- autonomy gone wrong; individualism twisted into self-centeredness. I'm not trying to insult you. As I say, I've noticed the same from myself. Always thinking of what I have to do, what I have to get done, instead of turning to my neighbor and realizing, it's not just me here.. I'm not going through this alone, I've just been isolating myself thinking I'm obligated to get through this on my own. Hard times are the best times to get back to our community frame of mind. Our individuality should serve our communities, not break them apart into billions of bits.
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NokomisMichelle
I write about what others try to forget. Formerly
12:38 PM on 11/24/2011
That way, when a doctor knows a patient can't pay right away, they look the other way instead of sending them into collection. That way, when a person can't pay right away they offer up another service as payment. It's sounds so silly, so impossible. It isn't. If we know each other as people and not objects, we maintain our own humanity.
Happy Holidays to you as well !
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NokomisMichelle
I write about what others try to forget. Formerly
12:37 PM on 11/24/2011
Dear D.A.-
I posted this to my twitter page yesterday, no hesitation. It's an important story. Because that young woman could be me, could be you, could be our sister, best friend, mother, wife, daughter, neighbor, cousin,- you name it. It's not as far away as we like to think. You took the words out of my mouth when you said "How about health care and education as basic human rights?"... To insure "Life, Liberty and Pursuit of Happiness" you have to provide, Health, knowledge and opportunities. Now, I agree with more conservatives when they shout we have to make our own opportunities. That is true. And in times like these when times are rough that's the perfect time to get creative BUT when all the path ways have been blocked, and all the materials used to pave those path ways have been exhausted and when all those path ways that are clogged have indulgently over used all the available materials, THAT is when the I feel we as a collective have to step in and take back. To apply this to health care, and what you mentioned about per capita cost, we don't need insurance companies at all- take them OUT of the equation because the middle man ALWAYS makes things more expensive. And, were the costs of higher education lowered then doctors would not graduate medical school with a debt upwards of $120,000.
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D. A. Wolf
Founder, Daily Plate of Crazy
02:09 PM on 11/25/2011
Thank you for all your comments, @NokomisMichelle, and for sharing Ashley's story. There's a long way to go - still - I hope you will continue to share. And I agree with you relative to education costs as well. Our various social systems are interdependent, of course, and the ripple effects are many - including dramatically rising costs.

There are no easy fixes to any of this. But we do have other models to look to for ideas, elsewhere in the world. And in the meantime, as you say, during times of hardship we have the opportunity to strengthen our communities.

By the way, I quoted you in my post today, at my site. So thank you for your good words AND actions, and for participating in this challenging conversation.
02:11 PM on 11/23/2011
I can't think of a better way to give thanks this week than by helping another woman fight for her life. Thank you for bringing this important story to our attention.
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D. A. Wolf
Founder, Daily Plate of Crazy
04:06 PM on 11/23/2011
@Motherese and Cathy - I agree. The "village" concept helps us all. And when we give, we receive so much joy in the process.

Thank you both for reading and commenting.
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Cathy Meyer
Writer, Divorce Consultant
01:14 PM on 11/23/2011
Thank you for sharing Ashley's story. I believe also! I've witnessed first hand the giving, loving spirit of our society and I do believe that Ashley will have what she needs through the generosity of others.