Family Spotlight

Meet the Perea’s … A COTA Family Trying to Raise Awareness of the Need for Hispanic Organ Donors

According to Jaclyn Perea, “My transplant journey actually started when I was born, but nobody knew it. It wasn’t until I was eight-years-old that I started feeling dizzy and we started to know something was wrong. Then I waited another five years for a different set of specialists to figure it out … my kidneys were failing.”

Jaclyn and her parents, Susan Ballard and Jose Benjamin Perea, Jr., desperately searched for answers. When the diagnosis came, it was a devastating moment for Susan and Jose and for Jaclyn’s two sisters. Jaclyn had Juvenile Nephronophthisis Type 1, which is a disease that causes kidney failure between the ages of 13 and 19.

Her only hope was a kidney transplant, and the search for a donor began immediately. Jaclyn’s condition deteriorated rapidly and in early January 2008 she was placed on hemodialysis at The Children’s Hospital in Aurora, Colorado. Jaclyn explains the hemodialysis process, “I started hemodialysis three times a week to clean the toxins
out of my blood. It would take about 30 minutes to get hooked up to the dialysis machine, about three-and-a-half hours to drain and clean my blood, and then another 30 minutes
to get me unhooked from the machine. During dialysis I felt very weak and I had
awful headaches.”

It was during these initial days of dialysis that Jaclyn’s mother, Susan, reached out to the Children’s Organ Transplant Association (COTA) for assistance. “Jaclyn’s father and I knew we were going to need financial assistance to get through Jaclyn’s transplant journey -- including the search for a donor. When our transplant social worker at Lucile Packard Children’s Hospital (Palo Alto, California) told me that an organization like COTA existed, I knew my first set of prayers had been answered,” said Susan.

A group of family members and friends in the Littleton, Colorado, area and a large group of students at Colorado State University (where Jaclyn’s sister, Valerie, is a cheerleader) instantly began planning fundraising events to help with Jaclyn’s transplant-related expenses. According to Susan, it was a huge relief during a time of enormous tension.

For four months, endless testing was done to try and find a living kidney donor for Jaclyn. According to Susan, Jaclyn’s dad has Type B blood (as does Jaclyn) and he was tested and rejected numerous times. Her Aunt Geneva was almost accepted as a donor, but then rejected. On March 14, 2009, Susan posted on Jaclyn’s COTA website (www.COTAforJaclynP.com), “Jaclyn has been listed for a cadaver kidney since May 2008 and her last living donor possibility (everyone else has been rejected based on blood type, blood compatibility rejection or health issues) is going through medical evaluation now. Anyone who knows Jaclyn and who is interested in being considered for a donor, please contact Jaclyn’s transplant coordinator at Lucile Packard. HOPE … Never, never give up.”

Part of the underlying frustration in Susan’s COTA website posting was related to the challenge of finding Hispanic cadaver organs, especially kidneys. Currently, according to the United Network for Organ Sharing (UNOS), Hispanics account for more than half of the individuals waiting for kidneys.

According to UNOS, “More than half of the national transplant waiting list is made up of multicultural populations. That is because some diseases of the kidney, heart, lung, pancreas and liver that are best treated through transplantation are found more
frequently in these populations. Although it is possible for a candidate to match a donor from another racial or ethnic group, transplant success rates increase when organs are matched between members of the same ethnic background. Consequently, a lack of
organs donated by multicultural populations can contribute to longer waiting periods for transplantation.” UNOS statistics show that 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.

Jaclyn’s dialysis went on for several more months after Susan’s March 2009 website posting -- months that were very busy for her team of COTA community volunteers who planned numerous successful events throughout Colorado.

Then on July 4, 2009, Jaclyn’s COTA website journal had the following post: “Miracles happen when you least expect them! Independence Day is by far Jaclyn’s favorite holiday. This morning at 2 am she got her wish … the chance to be free from dialysis F-O-R-E-V-E-R. Many earth angels were tested and rejected as Jaclyn’s potential kidney donor and even more continued to come forward to be Jaclyn’s kidney hero. However, this morning’s call told us Jaclyn was getting a perfect kidney from a perfect angel. Jaclyn lit off some fireworks and we flew from Denver to San Francisco and Lucile Packard Children’s Hospital for the transplant. This is Jaclyn’s miracle and she will be forever grateful to her kidney angel and she will celebrate her freedom from dialysis every Independence Day to come.”

Today, Jaclyn is nearly two months post-transplant and is living life just like other
15-year-old girls. Her family truly believes her diagnosis; her journey to transplant; the community support to help her and her family through COTA; and the effort to raise awareness of need for Hispanic organ donors are all reasons Jaclyn is thriving today -- to impact lives by telling her story and increasing the country’s awareness of the need.

According to Susan, “Watching my daughter face this awful illness and watching her struggle on dialysis for months 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 Jaclyn’s COTA website. COTA helped make an impossible situation seem a little bit easier.”

The Perea family is celebrating Jaclyn’s post-transplant health and happiness, but the family is also gearing up to face the emotional road to transplant once again. Why? Because Jaclyn’s 18-year-old sister, Deziree, has the same diagnosis as Jaclyn and has just been added to the kidney waiting list. In preparation, Susan recently packed up the family’s belongings in Colorado and moved everything to California -- to be close to Jaclyn’s amazing transplant team for her post-transplant care and to start the waiting process with Deziree, who is a student at Colorado State University in Fort Collins and who is holding out hope for a miracle cure.

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

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Giving Options

Where is the Missing Will?

Consider this recent example -- Over 40 wills were submitted to the probate court with a multitude of potential heirs each claiming to be the true recipient of a wealthy business owner who passed away in 1976. With a $2.5 billion estate at stake, there was intense interest in the decision of the court. After extensive review of the 40 documents, the court finally determined that none of the 40 wills were valid. Because there was no valid will, the court divided the $2.5 billion estate between 22 relatives. Court costs, attorney costs and estate taxes were enormous, but the 22 heirs still each received millions of dollars.

There are at least seven solid reasons for creating a will. A "peace of mind" estate plan starts with your will. The will passes your property to family, friends and favored organizations; and can direct distribution of a recent inheritance, fix errors in living trust funding, allow you to select a guardian, enable you to disinherit a child or other relative, permit you to select your executor, and help with a simplified probate.

1. Transfer of Property. There are some types of property that are best transferred by will. Many types of personal assets are difficult to transfer through a living trust or not appropriate for a "payable on death" transfer. Because vehicles and other personal assets are likely to be bought and sold, it is much easier to keep vehicles, furniture, collections and other items in the probate estate and transfer them by will.
2. Potential Inheritance. You might be planning to receive an inheritance from a parent, an aunt, an uncle or other relative, but the inheritance could be delayed by the probate process, potential estate issues or other reasons. Therefore, when you finally receive title to the property, there may not be a convenient time or opportunity to transfer the assets into a revocable living trust. As a result, the inheritance will form part of your estate.
3. Living Trust Errors. A living trust is a very appropriate way of avoiding the probate process. However, in too many cases a person has a valid living trust but has not properly transferred the real estate, securities accounts or other assets to the trust. As a result, the property that has not been legally transferred to the trust will be part of the probate estate covered by your will.
4. Guardian for Minors. The selection of a guardian for minor children is done through your will. Most states do not permit you to use a living trust (there are a few exceptions) for this purpose, so it is very important to designate the guardian in your will. When you create the will and designate the guardian of the person, it is also quite common to establish a family trust for the minor children and appoint the trustee.
5. Disinherit Someone. It is possible to disinherit a child or other heir. The appropriate place to explain that disinheritance or explain why the inheritance is a nominal amount (such as $1.00) is in your will.
6. Select the Executor. Your executor is a key person for a successful estate property transition. The executor will inventory your estate, advertise for creditors, pay bills and taxes, submit your will to the probate court, and obtain the court's approval for the final distribution. Your will is the document in which you will name your executor. Even if you have a revocable living trust with a trustee and a successor, it is essential to select an executor who will manage your
   probate property.
7. Simplify Probate. In many states it is possible for people who pass away with modest to moderate resources to have a simplified or summary probate. This permits your executor to manage your property and make distribution of it with very minimal contact with the probate courts. For example, California allows many estates with assets valued under $100,000 to use a simplified probate process. The executor will follow the directions in your will and distribute your property accordingly. In most cases, this will simplify administration and reduce your
   estate costs.

For more information about creating a will, call Rick Lofgren at 800.366.2682 or email him at

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Ways You Can Help

Share Some Smiles Across the Miles

COTA campaign websites provide a Guestbook for visitors to use to offer cyber-support to COTA families. The posted messages often elicit ‘smiles over the miles’ for COTA’s families, but they also inspire others (sometimes virtual strangers) to lend a hand in the fundraising effort. Take a moment to log onto www.cota.org and click on the Find a COTA Family icon to locate a family in your area and read the words of encouragement found in the family’s website Guestbook. You will easily why these cyber messages are generating ‘miles of smiles’ and you will perhaps be inspired to leave a message, and make an online donation, yourself.

Start your review of a COTA patient’s Guestbook by noting who is sending messages. Typically COTA website visitors are relatives, friends, family, classmates, and co-workers. With that in mind, you have a large and diverse audience for any message that you might post. For instance, you can add a note from you or your organization about the next fundraiser or you can send out a cyber-challenge to other Guestbook visitors. You can post a challenge by noting you are personally donating X amount of dollars (even $5.00 makes a difference) and then ask everyone who reads the Guestbook to do the same.

Finally, when online visitors create an account to be a “registered user” on a COTA Campaign Website, they receive notices of website updates allowing them to follow the family throughout their transplant journey. You can also share a COTA Campaign Website address with as many people as possible by including the address in your email signature line or in your social networking outlets like Facebook and MySpace.

The following is an excerpt from the Guestbook of www.COTAforRosaA.com. You will see messages sent from a family in Illinois all the way across the miles to Rosa’s home in Arizona … as well as Rosa’s heartfelt response to the caring thoughts of those emailing her messages of support and encouragement.

Log on today to a COTA family’s Guestbook and let the family know you are thinking of them, and also let them know how you are helping with the fundraising effort.

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COTA News

COTA Selected as One of CHANCEtoGIVE Foundation’s Top Performing Charities

CHANCEtoGIVE (www.CHANCEtoGIVE.org) was established to educate people about top performing charities, raise money for those great charities, and make contributing simpler for donors.

According to CHANGEtoGIVE, the organization’s goal is to bring attention to top performing charities that are doing great work and to provide donors a trusted set of charities to eliminate the need for donors to research the thousands of charities that exist in the United States. CHANCEtoGIVE features charities that have passed its stringent charity selection process. CHANCEtoGIVE limits its promotion to 12 top charities in each of four causes -- Children, Community & Family; Animals & Environment; Worldwide Disaster Relief, and Health & Wellness, which is where COTA is featured.

“Our goal is to make donating easier for donors and we have done that by enabling them to donate to top performing charities, to donate anonymously, to share a donation with more than one charity, and to be able to give the donation as a gift card to someone special, and to be able to do that in less than one minute,” said Kevin R. Robertson, Founder and Chairman of CHANCEtoGIVE, based in Dallas, Texas.

According to Rick Lofgren, COTA’s President, “COTA’s recognition as a CHANCEtoGIVE Top Performing Charity continues to showcase the importance of our mission … to help children and young adults who need a life-saving transplant by providing fundraising assistance and family support.” When a potential donor clicks on the Children’s Organ Transplant Association tab at www.CHANCEtoGIVE.org, the following information is displayed:

The Children’s Organ Transplant Association (COTA) gives hope and makes miracles for children who need or have had a life-saving transplant. What started as a drive to save the life of one child in Indiana has become a national organization that has helped more than 1,400 families and raised more than $53 million. Donations are used for transplant-related expenses such as co-pays and deductibles; transportation, lodging and household expenses while at the transplant center, and medical & medication expenses. COTA does not charge for its services, so every dollar raise through CHANCEtoGIVE is used for transplant-related expenses. COTA families come from a myriad of social, economic and ethnic backgrounds. But their stories have the same theme -- an overwhelming financial need and communities who answer the call to assist with that need.

According to CHANCEtoGIVE’s Kevin Robertson, “CHANCEtoGIVE does not solicit donations; we enable donors to make donations quickly and easily. So, let us help you discover the joy of giving. This is YOUR chance to give.”

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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. COTA funds are also available for post-transplant care.

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