Family Spotlight

Meet Allison Blankenship … A COTA Miracle

August is back to school time. Allison Blankenship is thrilled to be filling her backpack and joining her classmates as they return to G.W. Edgerton Elementary later this month. It was just a little less than two years ago that Allison was very ill, waiting for a new kidney … and a second chance at life.

According to her parents, Allison was always a quiet girl who slept a lot and ate very little. She was small for her age and at the age of six they figured out why -- Allison was diagnosed with chronic kidney disease. Doctors told her parents she would require a kidney transplant to survive. For two years, the Blankenships struggled with 45 pills and several shots each day to help Allison keep her own kidney working as long as possible. During these days, she grew more and more weary, and her parents grew more and more worried.

Early in the transplant process, it was discovered that Allison’s mom Jenny was a perfect match. Their mother to daughter transplant took place on December 5, 2007. While Jenny and Allison prepared for the transplant and Dad Rob was at home with Allison’s two sisters, their family and friends turned to the Children’s Organ Transplant Association (COTA) to see how they could help. A fundraising effort was launched in Puyallup, Washington, and many of Allison’s school friends and families got involved.

According to Jenny, “The transplant itself was so scary for us. Having COTA on board helped eliminate a huge amount of fear about finances – especially since it was Christmas and our resources were already stretched very thin. To me, COTA means immediate peace of mind and future security.”

Allison’s transplant is not the end of the story. According to her parents, the transplant was the beginning of a different medical journey … one filled with expensive immunosuppressants and regular doctor visits. Allison knows her new kidney will not last forever, so she is careful to get the most out of it while the family prepares for what the future may bring.

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

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Giving Options

Wise Estate Planning Questionnaire

As years go by, we often lose track of all we accumulate along life's pathway. In some families it is a cradle or christening gown that has been handed down for generations … or an autographed baseball signed by a forgotten hero from 1964 … or a faded program from the grammar school play our son or daughter performed in … or a even a can of paint used to spruce up our first home.

These are but a few of the things we sometimes tuck away in a closet, but they often shape our lives and always they remain in our hearts. From an estate planning perspective, there are several other bits and pieces we frequently accumulate and forget we have. Items such as savings accounts, stocks and bonds, mutual funds, mortgages or leases, partnerships, antiques and other works of art, furniture, and paid-up life insurance policies are examples.

We often forget about these items that are often tucked away in a safe deposit box or in the back of the file cabinet, but they too are gifts from the heart and can make a big difference in our loved ones’ lives. We also often forget how our lives have changed along the way. Marriages and remarriages, children and grandchildren, births and deaths of friends and loved ones, and changing interests, desires and priorities are but a few examples. Because of this, it is beneficial to do a thorough accounting of one's assets and priorities to determine what needs to happen to certain treasures, and even routine items, when we are no longer able to make such decisions ourselves. Often individuals neglect to write a will, or even a plan, for how their assets will be disposed of after they are gone. It is truly sad to witness cherished possessions indiscriminately disposed of when one fails to provide instructions for their heirs and loved ones.

The Children's Organ Transplant Association (COTA) has a questionnaire that will assist you in creating a mechanism for tracking all your assets and priorities. There is no obligation in requesting this personal resource that will help you document the legacy you wish to leave. This questionnaire will be helpful even if you are simply wishing to see what you have accumulated over the past few years. The information you gather stays in your possession and remains confidential; it does need to be shared with anyone without your express permission.

For a free copy of the Record of Essential Information, simply call Rick Lofgren at 800.366.2682 or email him at The questionnaire will be mailed to you immediately; Rick will be happy to work with you should you have any questions.

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Ways You Can Help

Meet A Kansas Teen Who Is Giving Hope and Making Miracles

Please read this note from a young girl named, Katy, who met COTA kid Kyle Hicks when they were in Kindergarten. Today, they are both teenagers who are in their last year of high school.

My name is Katy Weidner, and I am 17 years old. COTA’s Team Kyle has taught me that anything is possible with the right attitude. I’ve never seen a group of people more eager to work at a garage sale on a hot summer day. I regret the many days that I wasted being negative and complaining because I’ve learned that life is about the thrill of never knowing what tomorrow will bring so you have to embrace each and every moment of today. Now I believe that a day spent doing things only for you is a day wasted. If nothing else, I hope that after reading this, you remember that every day is a gift from above. It’s your choice what you do with every day, but if you want my advice … do something for someone else and you’d be surprised how great you’ll feel!

Over the past few months, I’ve realized how truly blessed and fortunate I am. I have boundless energy and nothing holds me back from accomplishing the things I need to get done. I get up every morning, go to school, come home, or go to the gym. This is just my typical daily routine, and I think nothing of it. However, for a special friend of mine every single day is a battle.

Courage, hope, and strength are only a few words that describe one incredible young man, Kyle Hicks. Kyle does his very best to be a normal 18-year-old. He enjoys school, working with computers, watching movies and television, eating chocolate, drinking Pepsi, and his cat, Sharon. He has a dry sense of humor and loves to talk. But Kyle is not like his classmates. Painful recurring blisters and open wounds cover nearly all of Kyle's body. He only weighs 51 pounds and is barely 4 feet tall -- about the size of a 7-year-old. Kyle has an inherited skin disease called Epidermolysis Bullosa (EB). EB is a painful disease. To help prevent infections, Kyle must keep all external blistered areas clean and covered with fresh Vaseline gauze and bandages. Each day, with his mother's help, he has to spend two hours soaking off old bandages and putting on new ones. He is usually bandaged from shoulders to toes. Kyle’s daily routine is much more difficult than mine, and for Kyle everything is a challenge …

There has been no cure for EB until now. A treatment for Kyle has been found. It will require a bone marrow transplant, and a perfect match was found in the summer of 2008. However, Kyle’s insurance will not cover the cost of this procedure since it is considered ‘experimental’. This leaves it up to Kyle’s family to pay $500,000. Although an amount of money that large may seem impossible to reach, my community has not given up hope. We have come up with nearly every fundraiser possible, and we have raised over $300,000 so far. That is only a small step toward the amount of money we need to give this deserving kid a brand new life. It’s a miracle that they have even found a surgery that can help him, and as for me … I believe we must be ever thankful for small miracles -- and ever hopeful -- for large ones.

Kyle and I were in the same kindergarten class; he has always held a special place in my heart. This past fall, my school hosted a balloon release in honor of Kyle. We raised over $8,000 and made many high school students aware of Kyle and his cause. It was a very memorable night for everyone involved. But as I sat next to Kyle that night, I couldn’t help but notice how much I’d grown and changed over 16 years, while Kyle was still the very same. I thought about all the opportunities I’d been able to have and the things I’d experienced. I couldn’t believe how many things I’d taken for granted in my life. Kyle is 18 now, and his whole childhood was spent as a battle. This just doesn’t seem fair to me. I have my childhood memories of riding my bike and sledding in the snow, and Kyle’s disease prevented him from being able to do things like that. However, I have hope for Kyle. I hope that one day he will have the freedom to experience anything he would like to do, with nothing holding him back. I know that with a little faith, and a lot of support from our community, we can make a dream come true. Together WE can make a miracle happen.

With a year of fundraising for Kyle under our belts, we’ve learned so much and we’ve come so far in this journey. In one year we’ve raised over half of what we need for Kyle and to me, that is incredible. We are still working as hard as ever to accomplish to reach our COTA goal. I know that financial situations are tough right now, so I’m just asking you to do what you can. Whether it be to keep Kyle in your prayers or to pass his story along to someone you know or to financially support Team Kyle. Achieving starts with believing, and every little step we take is one step closer to a new life for Kyle!

Katy and Kyle in Kindergarten	Katy and Kyle in high school

Katy and her mother have given us permission to use this letter and these photos. We hope Katy’s words inspire you to take action and to join a COTA team in your community. To learn more log onto www.cota.org and click on the ‘Find a COTA Family’ box.

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COTA News

COTA Miracle Maker Program … Get Involved Today!

The question is as simple as that. If your answer is ‘yes’, COTA invites you to join a growing group of individuals, called COTA Miracle Makers, who are helping give children and young adults across the country a second chance at life.

The COTA Miracle Maker Program was established to increase the effectiveness of COTA’s staff by identifying volunteers in almost every state who will work on COTA’s behalf, or on behalf of COTA patients. Through awareness-raising programs, COTA Miracle Makers can assist COTA patient campaigns’ efforts to raise financial support for transplant-related expenses and can highlight the dire need of organ and tissue donors.

Here are the Top 10 Ways to Give Hope and Make Miracles:

• Click here if you want to Donate Now to help COTA and COTA families.
• Decide to help children who need or have had a life-saving transplant. Click here to Find a COTA Family.
• Already planning an activity (or want to plan an activity) for COTA or COTA families? You should first review COTA’s policies and procedures. Click here to learn about COTA’s Guidelines and Procedures.
• Send COTA a proposal. You will receive a response from COTA within one week. This application allows you to tell COTA about the activity you are planning for COTA or a COTA family. If you would like to partner with COTA and have access to COTA’s fundraising resources you must submit an application. Click here to submit an activity Application Form.
• Not sure what to do? Look at programs available to individuals and groups who want to help COTA and COTA families. Click here to learn more about how you can participate in COTA Saturday. Or click here to raise funds through the One Million Miracles Program.
• Use COTA resources. After you register your activity, you will receive a Username and a Password. You can then access the password-protected area of COTA’s website. This area is designed with you in mind. You will find many ideas, templates and tools to make your activity successful.
• Share your success. Tell COTA about the outcome of your activity. Click here to submit an activity Report Form.
• Forward proceeds from your activity to COTA using the procedures on the
  report form.
• Celebrate the fact that you helped make miracles happen!
• Plan to continue to help COTA and COTA families. Join COTA Miracle Makers and make plans for an annual activity. Click here to learn how you can keep making miracles by becoming a COTA Miracle Maker.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Funds Raised Are Not Taxable and Will Not Jeopardize Assistance Programs
Because the Children’s Organ Transplant Association is the recipient and steward of the funds raised in honor of patients, these funds are not considered income for families. Families are not taxed on these funds, nor do these funds jeopardize any assistance patients have, or may qualify for, in the future.

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