Family Spotlight

A New Year = A Big Reason to Celebrate for a Kentucky COTA Family

Jonathan Robert Voorhees was born on May 4, 2009, much to the delight of his parents, Bill and Amber Voorhees, and his siblings, Savannah, Elizabeth and William.  He had a head full of dark hair and beautiful bright blue eyes.  According to his mother, with the exception of a little jaundice, he was perfect.

At Jonathan’s one-month check up, his pediatrician noted that he was still a bit jaundiced, but told his parents not to be concerned as it was probably just “breastfeeding jaundice” that should go away on its own. Unfortunately it did not go away.  At his two-month check-up, Jonathan’s blood work indicated a high bilirubin level and they were sent to Cincinnati Children’s Hospital Medical Center.  Within hours, Bill and Amber were given a preliminary diagnosis of biliary atresia and were told to prepare the infant for a liver biopsy.  According to Amber, their lives changed forever that day.

Baby Jonathan underwent exploratory surgery to confirm the diagnosis of biliary atresia.  About an hour into the surgery doctors found only faint indicators of where Jonathan’s bile ducts used to be, but that they were no longer working and had all but deteriorated.  Jonathan’s body had no way to drain bile, which meant his liver was being poisoned.

By November, Jonathan completed a transplant evaluation, and the family understood that a liver transplant was coming … and coming fast.  To make matters more difficult, eating made Jonathon so sick that he would not eat.  So he was diagnosed with failure to thrive and required a feeding tube.

By December 2009, things got even worse.  The doctors found a serious complication from the liver disease -- a blocked vein in his liver could lead to acute liver failure at any point.  Jonathan was officially listed for a liver transplant on December 11th.  The family was
able to celebrate Christmas together in their own home, but their thoughts were on
the transplant.

From that point, the family started the waiting game.  The majority of January 2010 was spent in the hospital as Jonathan became sicker and sicker.  On the night of January 24th, when Jonathan was only eight-months-old, Bill and Amber got the call to come to the transplant center.  “We were so happy and yet so sad when a liver became available.  We knew that somewhere out there another family was mourning the loss of their baby at that exact moment.” 

The transplant came not a moment too soon; Jonathan was much sicker than even the doctors realized.  The surgery was a success.  Just three weeks after the transplant
(and with only one minor case of rejection) Bill and Amber were able to take their little fighter home.

Once they were home, and their family was reunited, Bill and Amber began to realize the financial implications of the transplant.  According to Amber, “Despite having insurance that covered most of Jonathan’s medical expenses, we were facing thousands and thousands of dollars a year in uncovered medical bills.  This is when we reached out to the Children’s Organ Transplant Association (COTA) for help and for hope.”

“COTA has enabled us to focus our efforts on caring for Jonathan and not on worrying about how we are going to afford to pay the medical bills,” said Amber.  “Just like any other parent, our wish for Jonathan is that he can live a healthy and happy life and grow up to make a positive difference in this world.  COTA has given us hope that our dream for him will become a reality.”

“The simple fact that Jonathan is running around our home and living life to the fullest is the greatest miracle we could ever ask for.  Through this journey, we have learned that miracles happen around us all of the time -- some big and some small -- and most of the time in the form of simple acts of kindness from others, like those from our COTA team
of volunteers.”

At Jonathan’s transplant party on January 25th you will surely find him playing with anything he can get his hands on, and staying close to his brothers and sisters.  It will undoubtedly be an amazing celebration of life for this family who constantly gives thanks for their little miracle, Jonathan, and for their COTA team of volunteers.

Please visit www.cota.org and select “Find a COTA Family” to locate a transplant family in your area needing financial and/or volunteer assistance.  

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Giving Options

Bequests to Your Favorite Charity

Bequests to charity are the most popular type of planned gift, and approximately four of every five estate gifts are made this way.  A bequest to a charity should include the full legal name, city and state of the charity, particularly if there are chapters of a national organization or religious organizations with similar names.  An attorney who drafts the will should be certain that he or she has correctly identified the intended charity by legal name, city and state.  For example, if you were interested in making a gift to COTA, the document would contain this detail: Children's Organ Transplant Association, Inc; 2501 West COTA Drive; Bloomington,
Indiana 47403.

Specific Bequests

As a donor, you may choose to leave a specific item or amount to a charity.  For example, some friends of charities have left a bequest of land or property adjacent to the campus of the charity.  The usual purpose is for the charity to be able to use that property for future additions or expansion.

If you own art or a specific item that may be used by a charity for its exempt purpose, that asset may be a good choice for a specific bequest.  Once again, it is important to identify the exact item and the charity by legal name, city and state.  Some donors may also choose to list an alternative gift if they leave a specific bequest.  If for any reason your estate no longer owns the specific bequest property at your death, you may wish to designate another item or an amount of cash to the charity.

Another option is a specific bequest of an amount of cash.  This allows you to know the exact amount that will be transferred from your estate to charity.  There is one planning issue to consider with a bequest of a specific amount of cash.  If you transfer a specific amount of cash to a charity and your estate is much larger or much smaller than the present value, this bequest to charity may be a larger or smaller part of the estate than you intend.  If this is a reasonable prospect, you may wish to leave a percentage of the estate to your favorite charity.

Gift of Part of the Residue of the Estate

After all of the specific bequests have been made and your estate costs and taxes have been paid, the balance of the estate is called the residue.  You probably will choose to distribute the residue on a percentage basis.  Many donors decide to leave a percentage of the residue to charity.

Some donors give charity a specific percentage, such as 5%, 10% or more.  Another option is to give to all of your charities a share that is equal to the share of your children, nephews, nieces or other beneficiaries.

For example, one donor had two children and divided her estate into three shares; each child received one share and the charities collectively divided the third share.  Another parent with three children divided the estate into four shares and did the same.  Treating your charities as one child and simply dividing the estate with one share for each child and one share for favorite charities is a very convenient way to benefit your favorite charities.

IRA or 401(k)

If your estate includes an IRA or 401(k) in addition to your home, CDs and other securities, you might consider a beneficiary designation to charity.

From your perspective, your IRA is a very good asset.  For most IRAs, other than a Roth IRA, the plan is funded with pretax dollars.  It also grows tax free.  However, you or your beneficiary will pay income tax when you withdraw the funds.

If you pass away with a fairly substantial balance in your regular IRA or 401(k), that could be an excellent opportunity to make a charitable bequest.  For the vast majority of Americans who have an estate that is not subject to estate tax, the only tax paid by the family will be income tax.  Your home, CDs, stocks and bonds can be transferred to children without tax.

However, if you give family members your IRA, it comes with a large "you-owe-the-IRS" tax bill attached.  When children or other heirs receive your IRA, they pay tax at their highest rate on their IRA distributions.  This can be a sum of many tens of thousands of dollars.

Therefore, if you are planning to leave assets to charity, the transfer of an IRA may be a good plan.

Bequest for a Purpose

A bequest of assets through a will, a revocable living trust, or a beneficiary designation of a retirement plan also enables you to select a purpose.  In most cases, donors simply leave a bequest for the general purposes of the charity.  Because your bequest may occur many years after you sign your will, it is good to give the board of directors of the charity the opportunity to select the best and most effective use of the bequest.

However, if you wish to benefit a specific area within your favorite charity, that is perfectly fine.  You may designate the purpose for the use of your funds.  In selecting a purpose, it is still best to give a general category for the use of the funds, so that the organization can continue to make the best possible use of your bequest.

If you would like more information on making an estate or memorial contribution, please contact Rick Lofgren at 800.366.2682, or at rick@cota.org.  Individuals are welcome to make donations in honor of a specific patient campaign, or to any patient where the assistance is most needed.

This article is for information purposes and is not binding tax or legal advice.  Please consult with your tax advisor for specific items to discover how they impact your situation.

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Ways You Can Help

A Firefighter's Boot Makes a Big Difference

Fairhope, Alabama, is a picturesque and friendly Southern community.  However, on the second Saturday in December, anyone driving on Section Street would also add the adjective “generous” to the town’s description.  On that day, Fairhope firefighters answered the call to help Ansley Magnus, a five-year-old girl who needs a life-saving liver transplant.  Firefighters took turns holding their boots with outstretched arms and watched residents and visitors give generously to the Children’s Organ Transplant Association (COTA) in honor of Ansley.

Each firefighter held a sign that was made by Fairhope Elementary School students who should be Ansley’s Kindergarten classmates.  However, Ansley is too sick to attend school right now.  Pictures of Ansley adorned the signs as did words encouraging people to help Ansley get her miracle.  Within hours, the boots became filled with coins and bills of all denominations, and required periodic ‘stuffing’ to prevent the donations from spilling onto the street.

In a matter of a few hours, the Fairhope firefighters raised more than one thousand dollars for COTA in honor of Ansley Magnus -- money that will be used to assist Ansley’s family with her transplant-related expenses.

Giving Hope…Making Miracles is something you hear every day at COTA.  COTA’s mission is to help children and young adults who need a life-saving transplant.  But just how is hope given and how are miracles made?  The answer is simple … YOU.

Not a firefighter?  Not a problem.  Asking for a boot to be filled with contributions is just one way COTA Miracle Makers help Give Hope and Make Miracles.  COTA has a template to help you customize any event in your community into a Miracle Maker event.  Click the link below to get started.  We will respond promptly with some ideas to get you off and running to earning your COTA Miracle Maker lapel pin. http://www.cota.org/beA_miracleMaker/miracle_maker_application.php

For more ideas on ways you can help raise funds for COTA on behalf of a patient in your area, please contact Doug Lippert, Resource Development Manager at MiracleMakerInfo@cota.org or by calling 800.366.2682, extension 225.

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COTA News

HATS OFF for COTA Miracle Makers

Raising money for COTA in honor of a child or young adult in your community is about more than helping someone in need … it’s about giving hope and making miracles.  COTA baseball caps are one way you can do this on behalf of a local transplant family. 

Every week, in some part of the United States, there is a Miracle Maker raising funds to help a COTA family.  COTA assists Miracle Makers nationwide by providing brochures and other collateral materials and, sometimes, COTA baseball caps that can be customized for a particular campaign or fundraising effort.  Due to the generosity of owners of The Atlanta Cap Company (a former COTA family), these caps are priced at COTA’s cost and can be a great way to raise funds.  Each cap ultimately becomes a “walking billboard” for a COTA Miracle Maker’s fundraising efforts.

Think caps might be something that could help you in your effort to raise funds for COTA in honor of a local patient?  If so, or if you have any Miracle Maker event idea that you would like to discuss, click this link to get started: http://www.cota.org/beA_miracleMaker/miracle_maker_application.php

If you have any questions about the COTA cap fundraising program, simply email MiracleMakerInfo@cota.org.  You can expect a quick reply.  We look forward to hearing from you about how you can turn COTA caps into a Miracle Maker fundraising success story in your community.

COTA is committed to providing assistance to children and young adults who need a life-saving transplant and in helping our Miracle Makers find creative ways to raise funds toward that effort. For more information about COTA and how you can help, please click here MiracleMakerInfo@cota.org or call 800.366.2682, extension 225.

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Welcome to the COTA Family

These children and young adults are recent additions to our COTA Family. Please contact COTA, or the individual Community Coordinators listed at each COTA website (links provided below), if you would like to assist any of these fundraising campaigns.

	Born on May 11, 2004, Keller Lai was diagnosed with Chronic Granulmatous Disease. The doctors at the National Institutes of Health in Bethesda, Maryland have recommended a life-saving bone marrow transplant. An estimated $25,000 is being raised by COTA for Kellar L volunteers in Moore, Oklahoma.
	Born on December 28, 2009, Tyler Mason Peryea was diagnosed with Hemophagocytic Lymphohisticocytosic (HLH). The doctors at the Cincinnati Children's Hospital in Ohio, have recommended a life-saving bone marrow transplant. An estimated $40,000 is being raised by COTA for Tyler Mason P volunteers in Cumberland, Rhode Island.
	Born on January 29, 2010, Kaden McCormick was diagnosed with kidney failure. The doctors at Primary Children's Hospital in Salt Lake City, Utah have recommended a life-saving kidney transplant. An estimated $100,000 is being raised by COTA for Kaden M volunteers in Roosevelt, Utah.
	Audric Beaulieu was diagnosed with Biliary Atresia. The doctors at the Texas Children's Hospital in Houston, performed a life-saving liver transplant on October 10, 2011. An estimated $50,000 is being raised by COTA for Audric B volunteers in Missouri City, Texas.
	Born on January 9, 2010, Khalil Cruz-Hubbard was diagnosed with neuroblastoma. The doctors at the University of Minnesota Children's Hospital in Minneapolis have recommended a second life-saving stem cell transplant. An estimated $250,000 is being raised by COTA for Khalil C volunteers in Minneapolis.
	Born on May 20, 1995, Evan Aronsen was diagnosed with renal failure. The doctors at UCSF Medical Center in San Francisco, California have recommended a life-saving kidney transplant. An estimated $55,000 is being raised by San Pablo's COTA for Evan A volunteers.

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COTA Fast Fact

Services Provided at No Cost
The Children's Organ Transplant Association does not charge for its services -- 100% of funds raised in honor of patients are available for transplant-related expenses.

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