FAQ for Ashley Q

If you are considering contributing through the Children’s Organ Transplant Association for Ashley Quiñones, we hope these Frequently Asked Questions will be informative.

This FAQ was prepared in conjunction with information from COTA and Kelly Quiñones Miller of The Miller’s Mix.

How to Donate to Ashley Q (Kidney Cutie)

To donate online for Ashley, please do so here.

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.

More Background on Ashley Quiñones

Where may I get more detail on Ashley’s story and condition, and be kept as up-to-date as possible?

• Kelly Miller, Ashley’ sister, has written an eloquent summary of the family’s situation here – Life, Beautifully Unexpected. 

• Additional posts on Ashley’s journey through this process, including updates on all fundraising efforts, may be found here – Kidney Cutie.

More on Ashley’s Medical Condition, from Kelly Miller

Why is Medicaid denying coverage for the kidney transplant?

• Ashley received a double-lung transplant in 2001. It is the fact that her lungs are showing wear (and a condition known as Bronchial Obliterans Syndrome (BOS)) that Medicaid is denying Ashley’s surgical coverage. Nonetheless, her doctors believe that she will do well following the kidney transplant. They anticipate another 10 years of quality life – at least – if Ashley gets the new organ in time.

Why can’t Ashley go on dialysis like other patients in renal failure?

• Ashley’s renal health is directly tied to her respiratory health. Several years after her first transplant, Ashley went into chronic rejection, which is managed by medications. Rejection can take all forms; Ashley’s is vascular, which means her veins often refuse to carry blood into her tissues. Those veins must remain healthy, and many of them come from the renal system. If Ashley’s renal system is allowed to fail and she becomes dependent on dialysis, her lung health will also deteriorate — making her ineligible for another lung transplant. Without the eventual lung transplant, Ashley will not survive.

If Ashley will need another lung transplant, why should anyone spend money on a kidney transplant?

• Ashley will need another lung transplant because every transplant patient with a chronic disease (such as Cystic Fibrosis) will eventually need a second transplant. Transplanted tissues suffer from wear and tear at much faster rate than native tissues. When Ashley received her first transplant, everyone was fully aware that eventually she’d need another one. The same goes with this kidney. If she gets one now, she will most likely still need another one in 10 years or so. That’s the nature of transplantation.

What has Ashley done to slow this process?

• Most people find out they’re sick and expect their sickness to cater to them. Ashley is the opposite. She doesn’t smoke or drink, and every time she is told to stop doing something or start doing something, she hops to it. For instance, she’s gluten intolerant and so she stopped eating all gluten. She became medically diabetic, so she stopped eating refined sugars and high-carb foods. Then her kidney health deteriorated so she cut out high-potassium and high-phosphorous foods. She’s the most compliant patient you’ll meet in your lifetime! This has bought her more time, but the window of good health has closed. There’s not much more she can control through lifestyle changes.

Housekeeping

What happens to funds collected for Ashley, should the worst happen before the funds can be used?

• Should the worst happen and Ashley be unable to use the funds in her transplant account, they will not be disbursed to the family or anyone else. The funds would be signed over to COTA for use by another patient in COTA’s listings.

Ashley has one more appeal to attempt to secure funding. Where does that stand, and what does it mean for contributions made in her name through COTA?

• Should Ashley’s final appeal with Medicaid yield a positive result in her favor, she still requires $50,000 of money in the COTA account as her contribution to the surgical costs. At this time, she is far from that amount. Any excess over that amount would remain earmarked for her future lung transplant.

Will I see my donation reflected immediately in the balance on Ashley’s page?

• All monies collected through online donations are reflected in the online balance on Ashley’s page. Funds collected online are reflected immediately in Ashley’s balance, as soon as your online donation is processed. Monies collected through checks or fundraising activities are reflected when the checks and money orders are received and cleared by COTA in Ashley’s name.

Are any administrative fees taken out of my contribution?

• 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.

What if I have additional questions – about COTA, Ashley, or anything related?

• COTA is happy to answer any questions you might have. 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 her sister Kelly via email, at kqmiller @ gmail.com.