Family Spotlight

Meet Adam Trumble ... A COTA Miracle

Amy and Tim Trumble, are celebrating every moment they have with their little cowboy, Adam. It was just two years ago they spent hours with doctors, trying to figure out why their baby boy was constantly sick -- struggling with every virus his sisters brought home from school.

Adam’s transplant journey began in February 2007 when Amy took him to the local hospital’s emergency room because the toddler was refusing to eat or drink. Over the next several weeks, Adam became sicker and sicker with very few answers coming from the medical team. According to Amy, he was sent home with medications, and the family was told to wait and to watch. During those days, Adam’s health continued to decline, and he started eating, playing and sleeping less. Adam lost weight and suffered with intermittent vomiting.

Finally, in early June, his parents heard the devastating diagnosis: Adam had restrictive cardiomyopathy and his only chance for survival was a heart transplant. He was placed on the transplant list the next day. Time ran out, and in mid-July Adam’s heart failed. To keep him alive until a heart became available, he was given a Berlin Heart (a device used to temporarily assist the heart) to survive.

During these stressful days, a social worker at the hospital told the Trumbles about the Children’s Organ Transplant Association (COTA). A team of Wisconsin volunteers started working with COTA almost immediately to help alleviate some of the financial burden facing the family. According to Amy, “Our friends researched other fundraising organizations, but ultimately chose COTA because they focus on children and provide detailed help for the volunteers. We believe the success of the COTA fundraising campaign is due to the combination of COTA’s expertise and guidance and our great team of friends.”

Adam received his new heart ... and his second chance at life ... on October 1, 2007. Just 17 days later he was released from the hospital and sent home to Milwaukee.

“We see Adam as our little miracle,” said Amy. “We went from having a healthy one-year-old to watching him deteriorate to the point of complete heart failure in a few months’ time. But Adam fought the entire time. During part of his stay, he was put on an Extracorporeal Membrane Oxygenation (ECMO) machine to keep him alive. While on the machine, Adam would periodically rouse from sedation, smile at us and try to speak ... once he even pointed to the door as if to say, ‘please take me out of here.’”

During these many days of hospitalized care, Adam hit his lifetime insurance maximum -- before he ever received his heart transplant. According to Tim, “COTA reassured us that even if his supplemental coverage would fall through, Adam would still be able to receive his transplant. With COTA’s assistance, we were given the hope of financial security.”

Today, Adam is nearing the 18-month anniversary of his heart transplant at Children’s Hospital of Wisconsin. According to his parents, Adam is doing great. Although he gets sick more often than his sisters, Laura and Emily, he is a little trooper who plays and continues to have fun during his bouts of illness. And most touching, Adam tries to comfort either of his sisters when they are sick. Adam loves playing outside in the snow and going sledding with his family, but he cannot wait for the warm days of spring when the neighborhood will be full of children who, this year, he will be able to keep up with.

“Adam is a bright shining light for many,” said Amy. “Throughout our transplant journey so many people were out there praying for Adam, and for us, and wondering what they could do to help. Many of them channeled their efforts toward COTA, and made donations to COTA to help with transplant-related expenses. We truly have been blessed by all of the people who surrounded us, and who reached out to help us.”

Please visit www.COTAforAdamT.com and leave the Trumbles your own message of encouragement, or make a donation to help with ongoing transplant-related expenses.

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Giving Options

One Family’s Legacy

“I have been amazed and inspired by the stories of the lives we have saved because COTA was the last hope for a patient and their family -- and we came through for them in their time of need!”

Tony Paganelli

Tony Paganelli is an attorney who lives in Indianapolis, Indiana, with his wife Dawn and their children, Jack and Brooke. In October 1998, Tony joined the Children’s Organ Transplant Association (COTA) Board of Directors at the request of COTA Chairman Emeritus George Taliaferro. "You just cannot say no to George," remembered Tony. "I served as a law clerk for his wife, Judge Viola Taliaferro, when I was in law school. I have known George for several years."

Shortly after becoming a member of COTA’s Board of Directors, Tony and Dawn joined
The McConnell Society -- a group of contributors who make gifts to COTA through
estate planning or, in Tony's case, through the purchase of life insurance policies for
COTA's benefit.

"I see my role as a COTA Board Member as an opportunity to work to benefit transplant patients throughout the country, whether they are COTA patients or not," said Tony. "Dawn and I have been blessed (with their children). We sat down and asked each other what we could do to help others, as we find ourselves doing so well," Tony said. "We felt we could, and should, do something as we count our blessings."

When asked why he chose to purchase a $100,000 term life insurance policy with COTA as the beneficiary and owner of the policy, Tony said, "Dawn is a licensed life insurance agent and when we discussed this idea, we called Rick (Lofgren) to see if COTA would accept the policy and allow us to leverage this gift from our current resources. Becoming parents ourselves strengthened the cause of saving kids' lives, and that really motivated us to do this. After witnessing the life-saving work we do at COTA, I asked myself, 'what if it happened to someone in my own family?'"

For only $22 per month, Dawn and Tony have created a future (sometimes called a planned or estate) gift that will pay COTA $100,000 when Tony passes away. "I am young enough to provide a gift, which hopefully will not be made for some time, to benefit COTA’s kids."

"There is a unwritten rule of fund raising that states, 'Once a person makes a planned gift, their life expectancy increases by ten years or more,' so we hope Tony lives for many more years," joked COTA President Rick Lofgren. "Life insurance gifts, such as the one made by Tony and Dawn Paganelli, allow donors an opportunity to leverage their donation to make big gifts to charitable organizations like COTA without breaking the bank."

As a student at the University of Notre Dame, Tony was a volunteer for the legal services council. He was also active in the Optimist Club and Big Brothers Big Sisters during his
time as a law student at Indiana University. He is currently a member of the Indianapolis Chapter of Toastmasters International, and is active in the Indiana State Bar Association. "Dawn and I have made a similar gift to the Children’s Museum of Indianapolis, and hope
to make additional life insurance gifts to Notre Dame and Indiana University in the
coming years."

"I feel we should set an example by making this gift, as well as by being registered organ and tissue donors," said Dawn. "We are able to leverage our gifts to help the kids and families COTA works with on a daily basis."

If you would like additional information about how to use life insurance (or other planned gift vehicles) to make a significant gift to benefit COTA patients, please contact Rick Lofgren at 800.366.2682 or There is no obligation to request the information; the material is personal and is not shared with anyone.

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Ways You Can Help

Tournament Top Prize ... Hope and Miracles

“It was great talking to you today. You answered many of our questions and are precisely the organization we are looking for. Our golf tournament and tennis tournament will be held on October 20th, and it will be coupled with a raffle that over the years has generated a considerable amount of money. I took the time to go through your website and read the stories of these children who are in such desperate need. We would love to connect with a COTA campaign in our area and support COTA’s efforts to help patients like them with our tournament’s proceeds. I`ll talk to you further next week. Best regards, Bob and Fiona.”

When the call came in, and the follow-up email was read, COTA’s team found a campaign where Bob and Fiona could plug in. The Miracle Maker “match” was a perfect one. Through their annual golf and tennis tournament, Bob and Fiona were able to help provide fundraising assistance for a COTA campaign in their area. Here’s more about these new Miracle Makers from Mary Ann, a COTA Campaign Coordinator:

“I apologize in advance because I’m going to read my remarks. This is an emotional day for me, and I’m afraid of becoming overwhelmed. Thank you, Fiona and Bob, for inviting me here today, and to all of you for the warm welcome. I’m honored to be among your celebration today, a celebration of life and spirit.

The genesis of today’s event was not a celebration. No, it was a sharp contrast. Today began with the loss of life. It was what I imagine to be the blackest of times. But today is possible because of the perpetual spirit, the spirit of Laura Gage. I cannot express my sympathy to Bob and Fiona for the loss of their precious daughter. I am uplifted by the spirit of Laura, a young woman I never met. Through Laura’s gift of organ donation, she has continued the precious gift of life for not only her donor families, but the families of other donor patients. Today we know her spirit is alive and tangible through the work of her parents. Laura’s life and spirit bring the gift of life and hope to people like (COTA patient) Tony.

The day I met Tony, he was dressed up as a cowboy -- vest, hat, holster, riding his bicycle in circles around the cul-de-sac where my husband, sons and I lived. We had heard a child with cystic fibrosis was moving in, but we didn’t know what to expect. Our sons, ages 6 and 3 at the time, were anxious for a playmate, but we held back on telling them of the new boy for fear he would be unable to play and they wouldn’t understand. The first instant I saw Tony, any uncertainty melted away. He was as normal a little boy as I’d ever seen. My sons and Tony were inseparable, and along with the other children on our block we all affectionately referred to them as the little rascals. They rode bikes, dug holes, built forts, played soccer, had sleepovers, and enjoyed video games. Sure, there were some things about Tony that were different. He couldn’t eat certain foods. And when he did eat, he had to take pills. Kids are so adaptable. We kept unbuttered microwave popcorn in our cabinet, with Tony’s name clearly marked on the box. When it was movie time, everyone knew to make Tony’s popcorn, too. When Tony and the other neighborhood children joined us for dinner, it was a chorus of little voices saying, ‘Tony, don’t forget your pills.’ Life was sweet in what I referred to as Man-Land … our little men, playing together, going to school together, and even sometimes fighting together. Normal
little boys.

All that changed for Tony a couple of years ago. For some reason, his disease took aim at his liver. Less than 7% of cystic fibrosis patients have such a complication. Because of the enlarged size of his spleen, Tony could no longer play sports or have any direct physical contact. Even falling off his scooter or getting knocked into by a fellow student at school could prove fatal. Tony became more and more ill, spent more time in the hospital or at home on IV medications. As parents, we tried to shelter Tony, too. If our children had the least little sniffle, visitation was ruled out. The relationships suffered. Tony’s world was more and more becoming one made up of medical personnel and adults.

Even with his compromised health, Tony still enjoys doing things every teen enjoys -- hanging out with friends, socializing, playing video games and being on MySpace. His participation is sporadic, based on how he’s feeling and how much he can endure.

But Tony has a chance to catch up with what he’s been forced to miss these past couple of years. Tony needs a liver. He’s on the waiting list at Children’s Hospital of Pittsburgh of UPMC. The call may come at any moment. And your participation in today’s event will make it possible for Tony and his family to answer that call.

As Tony’s COTA Community Coordinator I’m often asked, ‘Won’t insurance cover the costs?’ And the answer is ‘No, insurance won’t cover all of the costs.’ For instance, when the call does come, Tony and his mom have six hours to get to Pittsburgh. That travel cost is not covered by insurance. They can’t rely on a commercial flight and the small planes we sometimes see being used to transport patients won’t work in this case because there will be no time to refuel. The solution? Chartering a plane. The problem? The average cost is $15,000 upfront. Thankfully, we have done enough fundraising up until now to help meet this expense. There’s the issue of lodging. Tony and his mom will have to be in Pittsburgh about three months following the liver transplant. She will need a place to stay. And then there’s the issue of Tony’s mom needing to eat every day, and pay for parking. Parking at the hospital is $28 a day. A cab would be even more expensive. Then there are the months of follow-up trips and associated costs, lists of drugs, many of which are not covered by insurance.

The examples go on and on. None of it would be possible without the support of people like you ... strangers who have opened your hearts and contributed to COTA towards Tony’s hope for a second chance at life. So for that, I thank you. I know Tony and his family thank you, too. God bless.”

This Miracle Maker event generated more than $7,500 to help COTA assist with transplant-related expenses for Tony and his family.

If you, or your organization, would like ideas about how to plan a Miracle Maker fundraiser, please contact us at 800.366.2682 or log onto www.cota.org and click on the
‘Raise Funds’ link.

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COTA News

April is National Donate Life Month ...
Help COTA Spread the Word

What COTA Miracle Makers Can Do During April ...
30 Day to Help Save a Life:

National Donate Life Month was established in 2003. Every day in April, people across the United States make a special effort to celebrate the tremendous generosity of those who have saved lives by becoming organ, tissue, and marrow donors and to encourage more Americans to follow their fine example.

Step 1 - Make it known: I want to be a donor

• Register with your State Donor Registry, if available.
• Say YES to donation on your driver's license.
• Tell your family, friends, physician, and faith leader that you want to be a donor.
• Fill out and sign a donor card, have it witnessed, and carry it with you.

Step 2 - Tell a friend: The need is great and growing.

• More than 100,000 people are in need of an organ for transplant.
• Each day, about 77 people get the organ transplant that gives them a second chance at life, but an average of 18 people die because they did not receive an organ transplant.
• Every 12 minutes another name is added to the national organ transplant
  waiting list.
• More than half the people on the waiting list for a donated organ are racial or ethnic minorities. Chances of getting a transplant increase if donor and recipient share the same racial/ethnic background.
• 90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.

Step 3 - Get involved: Share the facts.

Fact: Anyone can be a potential donor regardless of age, race, or
medical history.

Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.

Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.

Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.

Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.

Fact: There is no cost to the donor or their family for organ or tissue donation.

Becoming an organ donor is simple ... but you can do more.

The Children’s Organ Transplant Association is pleased to offer organ donor cards to the public. If you would like to request organ donor cards, click here for the Donor Card Request Form. Try these activities suggested by the Children’s Organ Transplant Association (COTA) and Donate Life America:

1. In Your Community -- Talk about organ donation with your family, friends and members of your community. By giving just a few moments of your time, you can help increase organ and tissue donation. Contact COTA to get information about
   a COTA patient from your area and leave a message of hope in their COTA
   website Guestbook.

   Contact your local Donate Life America chapter to see what you can do to help in your area. There may be local donor drives and events where you can volunteer.

   Promote awareness in your community by encouraging religious, civic or service organizations to publish educational and informative articles on donation and transplantation.

   Request COTA Donor Cards for distribution in your community. The Children’s Organ Transplant Association is pleased to offer organ donor cards for distribution at community events. If you would like to request organ donor cards, click here for the Donor Card Request Form. The cards are available in virtually any quantity
   at no cost.

   Send emails to your family and friends urging them to register
   to be an organ donor, and to share their wishes with their
   loved ones.

   If your life has been touched by transplantation, tell your story
   and spread the word about the vital importance of becoming an
   organ donor:

   -Visit youth groups and civic organizations

   -Speak at schools and centers of worship

   -Write a Letter to the Editor for your local newspaper

   -Discuss organ donation and transplantation in
   social situations

2. In Your Workplace -- The Workplace Partnership for Life, a campaign sponsored by the U.S. Department of Health and Human Services and the transplant community, calls on corporations, businesses and organizations of all sizes to share information about organ donation with their employees and promote the opportunity to donate life.

   Ask a transplant recipient or transplant professional to address your employees or members at a special gathering or at any organized event. Hearing a personal experience or getting the medical facts is often the first step in becoming an organ or
   tissue donor.

   Distribute brochures or donor education cards to employees.

   Use an educational web banner on your company website. Learn more by visiting www.donatelife.net.

Remember, one person can make a difference. You can help give hope and make miracles! April is the perfect time to get started.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Funds Available for Transplant-Related Expenses
Funds raised through the Children’s Organ Transplant Association in honor of patients are available for ongoing transplant-related expenses that include transportation, lodging, and food for follow-up transplant center visits; medications; co-pays and deductibles; and medical care. Changing insurance plans, inflated premiums and deductibles, and benefit caps are long-term issues for most transplant patients. COTA funds are also available for post-transplant care.

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