Family Spotlight

Steven González, Jr. ...
COTA Hispanic Teen's Community Fundraising Efforts Result in More Than 400 Individuals Added to the Bone Marrow Registry

The morning of October 14, 2006, will be forever etched in the memories of the González family of The Woodlands, Texas. It was on that morning when 12-year-old Steven González, Jr. was camping with friends near the Gulf of Mexico and woke up with red dots on his face. Later in the day, Steven took a tumble and received a large gash on his hand, which was then exposed to the water of the Gulf. When his family rushed him to the doctor, they were told that Steven's platelet and white blood counts were dangerously low, as was his ability to fight infection.

"We will never forget those words that day," said Mom Rosie González. "Preliminary diagnosis ... leukemia. Then the sky opened up over Houston and the streets flooded. It was as if all of creation was sharing our pain. Ten days later, we were told Steven had Acute Myelogenous Leukemia (AML M6 Leukemia), and he had only a two percent chance of survival. But we never gave up hope."

Steven's only hope was a bone marrow transplant. In preparation for the transplant, Steven began his first chemotherapy treatment on Halloween of 2006 at the Children's Cancer Hospital at M.D. Anderson Cancer Center in Houston, Texas. Just when the González family was starting to think Steven would beat the odds, there came more devastating news. The family's insurance company would not cover the search for a bone marrow donor for Steven. Without a donor search Steven's possibility of finding a match, and receiving a second chance at life, was severely reduced.

According to Dad Steven González, Sr., "We were beside ourselves wondering what we would do, and then we heard about the Children's Organ Transplant Association, COTA, and our hope soared again."

Within weeks of learning about COTA, the González's friends and families quickly mobilized and started working to raise the necessary funds to help pay for transplant-related expenses. Steven's bone marrow registration drives caused excitement, and not just in his hometown. Over a period of several months, bone marrow drives were held in the Texas cities of Houston, El Paso and San Antonio, as well as in New Jersey, New Mexico and California. According to Steven González, Sr., "We quickly learned the bone marrow registry does not have the needed representation of the Hispanic community. In order to help our son, we had no choice but to work to increase the number of Hispanics in the registry."

As of February 2008, the National Marrow Donor Program (NMDP) reported that of the 7,000,000 adults registered with NMDP, only 650,000, or less than 10%, are of Hispanic or Latino descent. While more than 3,000 Hispanics received a tissue or organ donation during 2007, the Hispanic community is in desperate need of organ and tissue donors.

According to Steven González, Sr., "The response to Steven's bone marrow drives was tremendous and resulted in a significant increase in the Hispanic representation on the nation's bone marrow registry. With COTA's assistance, and with the dedication of our friends and family, we found Steven a match and provided hope to numerous other Hispanic families who might not have found a match."

A total of 14 bone marrow registration drives were held in honor of Steven González, and they resulted in more than 400 individuals being added to the bone marrow registry. According to Steven's COTA Campaign Coordinator Linda Bankerd, "I held a bone marrow drive at work. I don't know how many people signed up, but I can tell you that many people were touched. I was extremely honored to raise awareness of the critical need of minority bone marrow donors, and I am very thankful to have opened the eyes, minds and hearts of even just one person who signed up as a donor. I will forever be changed after working with COTA and after witnessing Steven fight this battle to find a donor."

Steven's Aunt Melanie González coordinated bone marrow drives in New Jersey. She recalls, "It was difficult being so far away from Steven when he needed the help the most. Coordinating bone marrow drives allowed me to feel like I was helping from afar. The truly wonderful thing was I wasn't just helping my nephew, but other people too."

Steven found a donor, but from an unexpected source. The parents of two Hispanic baby girls donated their umbilical cord blood to Steven. On February 13, 2007, Steven received his transplant, and his second chance at life. He set many records post-transplant. Steven's new cells engrafted in just 11 days; Steven was released from isolation in only 12 days; and he was released from the hospital a mere 18 days after receiving the donor
cord blood.

According to Steven González, Sr., "Just like any other father, I have a deep desire and need to provide for my family, no matter what the circumstance. When the expenses started to add up for the bone marrow donor search, I truly didn't know how I was going to be able to provide for my family. COTA enabled the generosity, the prayers and the loving gifts of family and friends to lift us up and to offer financial relief during this time of great need."

According to Rosie González, "Watching my child face a serious illness is one of the most difficult things I have ever had to go through, but COTA helped in so many ways ... by offering financial assistance and by allowing us to keep in communication with our family through Steven's COTA website. COTA helped make an impossible situation seem a little bit easier."

Today, Steven is 18 months post-transplant and is living life just like other 14-year-old boys. His family truly believes his diagnosis; his journey to transplant; the community support to help him and his family through COTA, and the effort to add new Hispanics to the National Marrow Donor Registry are all reasons he is thriving today -- to impact lives by telling his story and increasing the country's awareness of the need.

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Giving Options

Close the Gaps in Your Estate Plan

Preparing and signing a will is only the first step toward ensuring that your wishes are carried out after you are gone. Your estate plan
should include:

• a current will
• a living will and a health care power of attorney should you become unable to make medical decisions
• a durable power of attorney to allow someone to act on your behalf when necessary for financial purposes
• possibly a trust

Even if you have prepared and signed all these documents, it is easy to overlook details that may result in your wishes not being fulfilled. Simple changes can be amended with a codicil -- a legal instrument made to modify an earlier will -- while significant alterations may require a newly created will.

Here are seven easy actions to take to make sure your estate plan is the best it can be:

1. Review your will every few years to make sure it is still current. You may have new grandchildren, a previously named beneficiary may have died, or perhaps you have moved. If you have indeed moved, laws regarding wills vary from state to state, so you may need a new will.
2. Consider leaving highly appreciated assets, such as stocks or real estate, to your heirs. Your heirs will then have a stepped-up cost basis, reducing their capital gains tax liability if they later choose to sell these assets.
3. Decide if you would like to avoid probate by putting assets into a revocable living trust. Merely specifying in the trust document that it includes such assets as your house or car is not enough to transfer the assets. The actual ownership or title to these assets must be legally transferred to the trustee. Not all assets can be owned inside a living trust, so be sure to discuss your situation with your attorney. Cash, securities, real estate and other such assets not held inside the trust must still go through probate.
4. Be especially careful in your decision making if you and/or your spouse have children from a prior marriage. Do you want your house to go to your spouse or to your children? What about personal items? If everything goes to your spouse, it could eventually end up in the hands of his or her children, not yours. The laws of succession are complicated, so decide carefully how to distribute your assets, and then make your decision clear in your will or trust.
5. Think carefully about distributions from your retirement plan, taking into account minimum distributions and withdrawal requirements. This type of income is taxable to you as you receive it, and will also be taxable to your heirs when they receive it. Therefore, retirement assets are an excellent charitable gift to make upon your death, in part to avoid the chance of double taxation from estate and income taxes. If you want to distribute all or a portion of your retirement plan assets to charitable organizations, you need to list or specify them on the beneficiary designation form, rather than just making a provision in your will or trust.
6. Make sure your will is properly signed according to your state's laws, and that the executor knows where documents are kept.
7. Finally, a difficult but essential step is to discuss your intentions with loved ones so there are no surprises.
8. Please call us to discuss how including the Children's Organ Transplant Association (COTA) in your plans can enhance your estate. If you need further information, feel free to contact Rick Lofgren at 800.366.2682 or e-mail him at .

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Ways You Can Help

If One Child Can Make a Difference, So Can You

Risha Shukla attends middle school and loves to spend time with her friends -- something she is now able to do because she received a transplant ... and a second chance at life. Five years ago COTA helped her team of volunteers raise funds for her auto islet cell transplant. Risha had pancreatitis and needed the transplant to regulate the production of her islet cells. According to Risha, "The 12-hour surgery was a success. I have no more pain and I play tennis and can learn an Indian instrument without a problem."

Risha is grateful for the donated funds that made her transplant possible. However, she says the cards sent to her while in the hospital helped her be encouraged before, during and after her transplant. Those cards brightened up the bare white walls of her hospital room and gave her hope. Many of the cards were from other kids ... her friends ... who were anxiously waiting for her to get healthy and return to school.

Knowing she wanted to help others in the same way so many helped her, Risha decided to start a foundation called the Kids Who Care Foundation. Risha's foundation has a mission of supporting kids who not only suffer with her diagnosis, but also with other chronic illnesses -- basically any disease that puts a child or young teen in a white-walled and bare hospital room. The Kids Who Care Foundation website (www.kidswhocareclub.org) allows visitors to leave a name of someone needing cards, to submit cards to a young person in need, and/or to share their own medical story. Volunteers and Kids Who Care Club members, create giant ‘quilt cards' they send to kids hoping to make them feel better by brightening up their hospital walls. Risha also speaks to her peers at schools explaining the miracle of transplant to kids using terms and language at a level they can more
easily understand.

COTA challenges you to take the lead in your community and reach out to help a COTA patient, like Risha. Take the first step and do something to making a difference, log onto www.COTAMiracleMakers.org to find no-cost tools, tips, ideas and resources.

"I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do."

Helen Keller

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COTA News

COTA Receives $52,000 Donation from the Carroll Shelby Children's Foundation

"It's an honor to help a fine organization like COTA," said Carroll Shelby, Founder of the Carroll Shelby Children's Foundation. "COTA's fight to promote organ transplants for kids across the country is very close to my heart. I established my foundation 15 years ago to achieve the same goal of providing better lives for youngsters in need."

The funds were raised during the 6th Kids' Automotive Art Contest, which concluded in April and was hosted by the Carroll Shelby Children's Foundation, Road & Track and the AFAS. The Foundation matched the $26,000 total raised during the contest, resulting in the $52,000 donation to COTA. Sponsored by Wells Fargo and numerous automotive companies and Road & Track, AFAS Kids' Automotive Art Contest challenged children to draw or paint the car they would like to drive when they grow up. Money was raised for COTA through contest entry fees
and donations.

COTA President Rick Lofgren accepted the donation on behalf of COTA with two COTA post-transplant patients at his side. Two-year-old Christopher Padua of San Francisco, California, received his liver transplant almost one year ago. Thirteen-year-old Myles Nesbitt of Fremont, California, received his kidney transplant nearly five years ago. Both boys are doing great post-transplant; and both boys received a standing ovation, and a lengthy round of applause accompanied by loud cheers at the Carroll Shelby check presentation on Saturday, August 16th.

"The entire COTA family is extremely grateful to the Carroll Shelby Children’s Foundation for helping us to continue giving hope and making miracles for transplant-needy children nationwide," said Rick Lofgren, President of COTA. "This gift will be used to help our most needy transplant families ensure their children have a second chance at life. Carroll Shelby understands better than most how a life-saving transplant can change a life forever, and we are thankful for his compassion and his commitment to COTA’s miracle-making mission."

About the Carroll Shelby Children's Foundation
The Carroll Shelby Children's Foundation was created by legendary racer and automotive manufacturer Carroll Shelby. After undergoing a successful heart transplant in 1990, he established the Carroll Shelby Children's Foundation. Thanks to the support of the Shelby Companies, Ford Motor Company and loyal fans worldwide, the Foundation is helping children battle life-threatening illnesses and promoting the importance of organ and tissue donation. More information is available at www.cscf.org.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Funds Available for Patients' Transplant-Related Expenses
Funds raised through the Children's Organ Transplant Association (COTA) on behalf 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. Having COTA funds available for post-transplant care helps alleviate these concerns. There is no deadline for the use of funds.

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