In the town of Sanford, North Carolina, population 30,000, a community is watching one of their own, closely. The fact is, without an organ transplant, 31-year old Ashley Quiñones will die.
Ashley needs a kidney transplant. Dialysis, which is a viable long-term option for many, isn’t a long-term option for her.
Medicaid – Ashley’s only insurer – will not fund the necessary surgery, which is estimated at $250,000. The family has appealed once and been rejected. A second appeal is in Ashley’s future, but the process, of course, requires time.
Our health care crisis? It’s about individuals. It’s about families. It’s about you and me. And it’s certainly about Ashley.
Ashley’s kidney donor has been cleared and ready to go for the past two years, but without the ability to pay for the surgery, Ashley waits. And waits. If Ashley has to wait another year, from everything I understand, it’s unlikely that she will be here.
To be clear, Medicaid has reasons for their position (more on that in a moment), but Ashley’s doctors are convinced that a new kidney will give her another 10 years – at least – of quality life.
It’s worth noting that Ashley has never been able to purchase health care coverage because of a pre-existing condition – Cystic Fibrosis – and therefore, has no option except Medicaid and their decisions. Her life is quite literally in their hands.
Ashley’s Story, and Ours As a Community
Ashley was born with Cystic Fibrosis, which has meant a life of assorted medical interventions, yet a life that includes joy, loving, and giving back. She works two jobs – one teaching English to non-native speakers through the local community college, and another, as a developmental aid to a child classified as “severe profound.”
Ashley’s dream? To use her theater education and training as an actress to help disabled children through drama therapy.
Many of us believe our health care system is rife with problems and inequities. This is only one example. Some of you may say – “yes, but there are rules and tough choices, there are good people whose job it is to make these difficult decisions.”
And I would agree. I can’t imagine the heart-wrenching decisions that must be made in systems that are complicated and costly, and in which clear-cut answers may be not always be evident. But systems are intended to serve people – and not the other way around.
Sometimes, when issues are so complex that we don’t know where to start to repair them, when we lose sight of the human element, when we feel overwhelmed – we surrender to the futility of it all. And we do nothing.
I know that’s the case for me, or has been in the past.
Yet I believe that most of us want to make a difference in the lives of others. We simply don’t know where to begin.
Maybe we can begin with Ashley. Maybe we can begin by picturing our own healthy children, their healthy friends, our healthy selves.
There but for the grace of God, as the saying goes. And I tell myself – maybe we can’t save the world, but we can save one life.
Not one of us, on our own. But many of us, working together.
COTA, and Ashley’s Transplant History
Ashley’s family and community have been working to raise funds. They’ve managed to accumulate just over $16,600 – all handled through the Children’s Organ Transplant Association (COTA), where Ashley is listed for a kidney transplant. COTA is a 501(c)(3) national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. COTA has been in existence since 1986, with a 4-star rating (out of 4) from Charity Navigator.
Having received a life-saving double-lung transplant in 2001, Ashley is in COTA’s system for life. You can read more about Ashley on their site, and view the progress of donations on her behalf.
In the interest of full disclosure, the medications Ashley takes to keep her lungs healthy and prevent her body from rejecting them place a tremendous strain on her system – specifically, her kidneys. And those hard-worked organs are at the end of their rope.
It is the fact of the lung transplant and a condition known as Bronchial Obliterans Syndrome (BOS) that Medicaid is, to date, denying Ashley’s surgical coverage. Her lungs are beginning to show wear, though her doctors believe she will stabilize and do well following the kidney transplant. It is expected that she will need another lung transplant at some point in the future.
The estimated cost of the kidney transplant is $250,000.
And remember – Ashley has a donor cleared and ready to go. What she doesn’t have is the money that’s required.
Big Bucks in Context
So just how much is $250,000? Or, as to what remains to be raised – $234,000?
When you mention a sum like that, it seems beyond comprehension. But what if you spread the cost over 1,000 people? Or 2,000 people? Or more?
- That’s $234 spread over 1,000 people.
- That’s $117 if 2,000 people were to contribute.
Those are amounts that I can fathom. Those are amounts I can put into context.
- $117 is less than an afternoon at the local day spa, after a stressful week of work and kids.*
- $117 is less than three weeks of Venti Lattes, grabbed on your way to the office and likewise, on your commute home.**
- $117 might be the cost to personalize your holiday cards, to purchase the shoes that match your new dress, to send the gift basket you’ve picked out for your mother-in-law.
My point in mentioning these figures is only to put these amounts into context. Everyone I know works extremely hard for their money, and times are tight, tight, tight.
But if 2,000 people could come up with $100 or so? If some of us can donate more – and others, understandably, less – isn’t it worth trying to help?
The fact is – any amount helps. Every dollar brings Ashley closer to returning health.
Our Health Care Crisis Involves People & Families
I’ve written about the health care conversation in this country before, several times. I would like to cite a comment made on one of my health care-related articles, not long ago. It was written by Ashley’s sister, Kelly Miller, whom you may know from her blog, The Miller Mix:
…we struggle to raise [money] for my sister’s kidney transplant that Medicaid is refusing to pay for. However, she couldn’t buy health insurance from any other provider even if she had a steady 40-hr/wk job because of her pre-existing condition. So she can’t buy coverage and the system won’t give her coverage, so she must pay out of pocket for a kidney she’ll take great care of.
Meanwhile, someone who smoked and drank most of their lives, and likely will again, can get a transplant easy-peasy for a fraction of the cost because the system is set up in their favor.
I’ve been unable to get Ashley out of my mind since reading Kelly’s comment, and this post is the result of the past weeks of research, of talking with Kelly, and talking with COTA. I can’t stop asking myself: What if one of my children had been born with CF or some other disease? What if I had no medical coverage to help them?
Finances are tight in my household, as they may be in yours. But I’ve just made my COTA donation, which required only a few minutes. I went directly through Ashley’s contribution page, clicked the DONATE box, completed the process, noted that it was a gift in tribute to my two sons, and they will receive an acknowledgment letter to that effect.
I think it’s the best Christmas gift ever. And I know they will agree.
Additional Details
It took five minutes and a credit card. The amount of my donation was reflected immediately. One minute later, I received my email confirmation, usable for tax reporting.
Painless.
Easy.
And here’s the before and after in terms of Ashley’s COTA account:
Should you choose to read more about Ashley, you may do so here. To learn about the donation process in general – by check, money order or online, read here.
To donate online for Ashley, please do so here.
As to use of funds, any monies donated to Ashley through COTA go 100% to Ashley’s transplant-related medical expenses. No administrative or other fees are taken out of your donation, which you will read on COTA’s site and they will confirm if you speak to them personally.
Here are a few more details, to direct your donation to Ashley’s COTA transplant account:
- It is critical that you earmark donations for Ashley Quiñones. If you are donating by check, write her name in the memo line of your check.
- If you wish to donate online, you may do so directly from this page and complete the transaction via credit card. This is a standard, simple 4-page process, and VeriSign secured.
- As part of the online process, if you do not wish to receive any mailings or be solicited by COTA in any way, then check the box that says “Do not include my name on the COTA report.”
- You have the option of donating for Ashley in memory of someone or in tribute to someone – in other words, as a gift. As I mentioned above, money I would otherwise spend on something my sons don’t really need will go, instead, to Ashley’s kidney account through COTA.
- When you donate in memory of or tribute to someone, COTA will send an acknowledgment on their letterhead; you have only to use the space in the online process or, if sending a check or money order, enclose a note with the name and address of the person you are honoring and the occasion.
- Your COTA donation for Ashley may also be eligible for matching gifts from your employer. Be sure to check COTA’s Matching Gifts page, use the search function, and see if your employer participates. (I tried it out – there are many organizations that match funds. This could double the amount Ashley will receive toward her transplant!)
- If you don’t find your employer listed, feel free to contact COTA to verify. And don’t forget you can check with your Human Resources Department as well.
- Be sure to provide your email address if you wish a tax receipt to be emailed. Otherwise, your address information will be used to acknowledge your tax deductible contribution.
You may find a few more housekeeping items here, at this FAQ for Ashley Q.
Ashley’s Future
So what will Ashley’s prospects be with the new kidney?
According to her doctors, if she receives the new kidney, her prognosis is excellent. Clearly, the sooner she can undergo the transplant procedure the better; her doctors are optimistic. However, the more time that passes, the darker the outlook.
As to the dialysis issue, Ashley’s overall health must stay reasonably good in order for her to qualify for a second double-lung transplant. If she winds up on dialysis, her overall health will plummet. Most of Ashley’s lung issues are vascular (related to her veins), and the renal system (kidneys) is tied into that.
While Ashley is currently in renal failure, it’s still manageable. She’s continuously adjusting her diet to avoid dialysis for as long as possible. At this point, the doctors are predicting another month or so.
If you want more detail on this, the best person to contact is Kelly, Ashley’s sister (her email is below).
And please see Kelly’s updated post for more information on Ashley’s situation.
What Wouldn’t You Do?
I wasn’t asked to write this post. But I couldn’t have looked myself in the mirror if I hadn’t. Call me idealistic, call me crazy, call me annoying. But I insist on believing that we can make a difference in the world – one person at a time.
What if Ashley were your sister, your daughter, your best friend? What would you do to save her life?
What wouldn’t you do?
Some of you know Kelly, Ashley’s sister. Some of you have already given generously, and I know the family is immeasurably grateful. I will remind you that we teach our children through our actions, and it’s never too late to do so.
As for the fact that it’s the time of year that organizations come calling, and we look for tax deductions, I’d say that helping Ashley get a kidney is a win, all round.
So I’m asking you to consider giving – if you can, and whatever amount you can.
I’m also asking that you share Ashley’s story, and its urgency. This is about Ashley, but also every life that she will touch in the future – for the better. And this is about us, and fighting a growing sense of powerlessness by taking action – one person at a time.
If you decide to donate, you may click the image to the right (Donate Now), which will take you to Ashley’s online Donation page.
More Information on COTA.org
For more information you may contact COTA directly online, by calling 1-800-366-2682, or access Ashley’s page at www.cotaforashleyq.com. You may also contact Kelly via email, at kqmiller @ gmail.com.
Whatever you decide to do, thank you for reading, and for your consideration.
Update 11/13/11 – If you’re tweeting for Ashley, please use the hashtag #KidneyCutie – and thank you!
Please read this update 12/2/11 – Sometimes the Gods Smile. And please do keep donating!
*A little research showed half-day spa treatments ranging from $180 to $280 in my area.
**Starbucks Grande Caramel Macchiato: $4.25 before tax, in my neighborhood. Venti Latte: $4.50 before tax. Two a day? You’re in the vicinity of $45/week!
In for $100. I love giving to someone who I learned about who really needs the care.
Madge, you are a gem. Please spread the word. xoxo
Thank you, thank you, thank you. I don’t know if my family, my sister, or I can really adequately express how damn weepy it makes us that you have taken so much time and energy to change just one life.
And for anyone who reads this, understand that we know how to pay it forward and do so every day, in both little and big ways. When someone in your family is sick, you never take anything for granted, including the kindness of strangers.
Kelly,
I think the world is full of good people who want to help each in real and tangible ways. I’m only sorry that this post is so long – in an attempt to anticipate questions – that some may not get to the bottom line. It’s a pretty simple “do unto others.”
We can all help. It’s not hard. And it’s necessary.
I hope people will pass along the message – or the COTA link for Ashley: http://cota.donorpages.com/PatientOnlineDonation/COTAforAshleyQ/
Sending love to your family.
In as well. God bless.
Just donated. Thanks for the nudge!
Hugs to you and all your beautiful babies! Thank you, Stacia!
I’m in—and I love your thinking, your spirit and your moxie.
Thank you Bruce. And for always being an inspiration.
Wolf, Thank you for caring. And encouraging others to do the same. Donation. Done.
xoxo
Thank you, Rudri. (Hugs to you and your family.)
I’m in as well. Having a son with Downs Syndrome we know all about the endless fight with insurance companies . . .
Thank you!
What about a Facebook campaign to raise the money? I think it would work and quickly. I would be happy to be involved in setting it up, and getting the word out.
Write to me if you’re interested, or maybe there’s already one?
Horrible story, the medical system is so unfair.
Ashley does have a FB page. And her sister Kelly would be the one to contact for more detail, so we can coordinate efforts. Meanwhile Kathy – thank you so much for your willingness to get involved! Please tweet and FB – and Kelly has more on her site today as well: http://themillermix.blogspot.com/2011/06/kidney-cutie.html
Thank you for stepping up to the plate and showing the world it can be done one step at a time. My family has been without health insurance most of the last ten years due to a variety of reasons but mostly premiums for the self-employed that are not affordable to us. Do you pay your mortgage or do you pay for health care? Do you feed your family or do you pay for health insurance? It is beyond imaginable that in a country as abundant as this one, that children should go hungry or the sick should be denied treatment. But it takes a village and we are the village. It just takes someone like you Wolf to unite us. There is nothing that cannot be done when resources are pooled. I’m in.
This is exactly the scenario that so many families face. Yours, mine, millions of others. Once over 45, those individual health care premiums start to sky rocket. But if you don’t have them and you find yourself in need of health care, then what?
Ashley’s case is even more telling of a system that doesn’t realize that health care for all of us benefits all of us. Thank you for being part of this voice for the village, Dorothy, for being “in” and spreading the word on #KidneyCutie. And more detail here, from her sister, Kelly: http://themillermix.blogspot.com/2011/06/kidney-cutie.html
Thanks everyone for your generosity. My mother had to fight the insurance battle starting when my sister was first diagnosed at age 2 and wound up working at a minimum wage job (while raising 3 kids by herself) to ensure that she never earned out of Medicaid because a) Ashley had a pre-existing condition and b) she couldn’t afford the premiums for the insurers that would cover Ashley. (Note that she always bought regular insurance for herself, me, and my older sister.) It’s so wrong that someone has to remain poor to keep her child alive.
Ashley does have a Facebook page — http://www.facebook.com/kidneycutie. I’m not sure what a “Facebook campaign” means, but we welcome any and all help!
Very moved by this. In for $20. So sorry anyone should be in such a situation.
So kind of you, Jim. And all the way from the UK. Please do check periodically – to see how the fund is progressing for Ashley. I believe we can do this. And people like you joining in are part of that. Thank you again.
Thank you for bringing our attention to Ashley’s story. I applaud you, D, for responding to a broken system with real action. I’m happy to join your fight for the #KidneyCutie.
It’s going to take that village, Kristen. But I’m a believer in its necessity. Thank you so much for helping.
Thank you, D, for bringing this to our attention. Ashley’s story has certainly struck a nerve with me. A dear friend of mine has a daughter with CF. And I also lost my best friend (to another disease) at the age of 33, and I know we all would have done anything to save her. I will certainly donate and I hope that this touches the hearts of 2,000 people and makes a real difference!
I’m so sorry about your friend, Donna, and it sounds like you have a bird’s eye view of what CF can do, and the challenges for the family. Thank you so much for your donation, and for sharing Ashley’s story. (Love to the family. xoxo)
Will do so tomorrow from work (checking to see whether company will match donation first). Will also share this important post right now. Thank you BLW. You keep us honest. xxoo
Yes! And everyone should remember they can check to see if their employers will match their gift! (Thank you for giving and for sharing.) xoxo
@Donna – I’m so sorry for your loss. Ashley’s story should give your friend hope. She’s 31 and with the transplants will have at least another 10 healthy years. At least. That’s 40+ years for a girl who didn’t start out with a very positive prognosis.
For everyone else — I also wanted to encourage you to ask local businesses, etc to consider donating to Ashley’s COTA account when they are looking for end-of-year write offs. It’s completely tax deductible and will be money well spent.
Thanks to all!
This is not what I was expecting to read when I saw all of the posts on Facebook. I had no idea it would be about me. While my students were studying Pablo Neruda right next to me, I was holding back tears so they wouldn’t realize I wasn’t working on classwork! I can’t believe someone who has never met me is so passionate about my cause. I live my life through laughter, even when it comes to my transplant, but the fact of the matter is that it is very serious and I am very scared. The sooner I can get my transplant, the sooner I can put my fears behind me. I’m only 31 — I shouldn’t have to fear death and I shouldn’t be told by the government of all people that my life isn’t worth saving. I understand we are in a recession, but now we’re cutting lives from the budget? But these things are a reality in my life right now. I can’t thank you enough for crusading for me. I hope people are reading and I hope, even if it is only in a small way, my story can change their lives … Ashley aka Kidney Cutie
Oh Ashley. No, you shouldn’t have to fear death at 31. And you shouldn’t be told by the government that your life isn’t worth saving. It’s unthinkable. It’s inhuman. It’s also wasteful, stupid, and illogical to “cut lives from the budget” as you say.
We need you now more than ever, Ashley. Alive and well – teaching in your classroom, teaching by example, reminding us what matters – and it’s the quality of life we lead and not our gadgets and our square footage and our “bottom line.”
Pablo Neruda. If you aren’t familiar with this one – Emerging, from Extravagaria – please read it. I have lived by its words for so many years and they give me strength every time the well seems too dark and too deep to climb out. I hope they will give you strength, too. The only way out of the well – I believe – is all of us, together.
Thank you for commenting here, Ashley. Your story is changing lives, and will continue to do so.
Happy to help however I can.
Thank you, Jack!
My daughter is also named Ashley – we are in for $117 and it will be matched by Microsoft. Hang in there.
Thank you, Clark. Fabulous about the company match. Love to your family.
Strangers helping strangers…this is where it begins, right? Every little effort towards kindness and compassion is larger than life. You continue to step yourself up in my eyes, BLW. Ashley, hang in there.
I’m in ~ will do it from work tomorrow so I can get a company match (1:1 – yes!).
prayers & love, Joy
Thank you, Joy. And hooray for a company match, too! xoxo
So proud of you for doing this and sending all kinds of warm and hopeful wishes to Kelly and Ashley.
xo
Christine, Thank you – but the hard work, the real work is and has been underway for such a long time – by Kelly, by her family, by the community of Sanford, NC, and by Ashley herself who keeps going and keeps living fully and keeps fighting to do so. I am awed by what they have done, and by their warmth and spirit. I think the rest of us can do just a little bit to help, and we’ll all be better for having Ashley’s light shining for many, many years to come.
Please spread the word for Ashley, and thank you so much.
Can I re-share your post on my blog? I’m in, of course, and have posted it on Google+ but would also like to get it on my blog.
Yes, absolutely, Supermodel. Use whatever you need – and thank you for sharing Ashley’s story.
so so so grateful that you shared this. What a courageous young woman. It is so sad to me that given the fact that it is 2011, and we live in one of the most abundant cultures in the world, that anyone should have to go without health care. Makes no sense to me. This we can do something about if we unite as concerned individuals. If this were my daughter I would not be too proud to beg.
I hear you, Kristine. And thank you for whatever you can do, and sharing Ashley’s story.
I am touched in so many ways by this post–your efforts, Kelly’s efforts and Ashley’s profound struggle. And the obvious grace she brings to this utterly awful situation. Thank you for posting this here. I am inspired.
Thank you for reading and commenting. And we hope you’ll spread the word and help!
I have been out of the blogosphere for a while but to come back to this is a joy. I am in as well. What a wonderful thing you have done here. Not only have you made a difference but you have inspired us all to make a little difference. As Mother Theresa said, “There are no great things to accomplish in this world, only small things done with great love.”