Family Spotlight

Meet Brayden and Trevin … Two COTA Miracles

November is a time of reflection and giving thanks. But just three years ago, Martin and Regina Saunders of Huntington, West Virginia, were hard pressed to be thankful. Their boys, Brayden and Trevin, were diagnosed with an extremely rare genetic disorder called purine nucleoside phosphorylase (PNP) deficiency. The boys were two of only 50 cases worldwide of this deadly disease, and both boys needed a bone marrow or cord blood transplant to survive.

Six months later, while organizing bone marrow drives to find donors for the boys, they began to realize how devastating the transplant process is to a family and saw the beginnings of the financial toll the transplants would take. One transplant, with a price tag of $300,000, is financially crippling for any family, even those with adequate health insurance. The Saunders, however, had to multiply everything by two. Without hesitation the Saunders contacted the Children’s Organ Transplant Association (COTA) and within weeks their friends, family members and colleagues launched their “For the Boys” fundraising campaign.

July 5, 2007, was transplant day for Brayden and Trevin; both received cord blood transplants within a two-hour time span at Duke University Medical Center in Durham, North Carolina. Within a month it was clear that Brayden’s transplant was off and running, but Trevin’s was not going so well. On November 14, 2007, Trevin received a bone marrow transplant and then battled a terrible fungal infection during the winter months. Finally during late spring 2008, the Saunders family was able to return to their home and begin enjoying both boys’ second chance at life.

“The comfort of knowing we were not alone in this process made a huge difference in our mindset throughout our journey. Even though we weren’t sure where to begin, COTA gave us hope by providing our team with the tools needed for a successful fundraising campaign,” said Martin and Regina.

They continued, “COTA has been an immense blessing to us. When we were told both boys needed transplants, we were frightened for the health of our children and what they were going to endure, but we also knew we were going to face large financial obligations. COTA has provided us hope that when all is said and done, we won’t be financially destitute and we can provide a comfortable life for our children post-transplant.”

“COTA is a Godsend … a miracle for our family.”

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

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Giving Options

Be Wise With Your Will

It is important to make smart decisions when it comes to your will. Here are two common questions -- and their answers -- about this essential document.

1. What happens if I die without a will?
   If you spell out your intent with a valid will, then you (rather than state law) will determine how your estate is distributed. Therefore, by specifying your intentions, your spouse and loved ones will receive the inheritance you intended, and a charitable organization such as the Children's Organ Transplant Association (COTA) can continue to receive your generous support.
2. Where do I start?
   Begin by consulting an attorney in the state where you live. The attorney will match how you want your estate distributed with the best planning strategy to accomplish your goals, at the lowest tax cost. This type of planning is beneficial whether you want a simple plan, have a sophisticated estate or wish to include bequests, i.e. gifts in your will, to charitable organizations.

For more information about planning your financial future, creating a will, or supporting the Children’s Organ Transplant Association, call Rick Lofgren at 800.366.2682 or email him at for a no-obligation information packet.

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Ways You Can Help

Striking Out CAN Mean a COTA Home Run

At the ballpark many of us are busy munching on hotdogs, peanuts and Crackerjack while cheering on our favorite baseball team. This was not the case for one young man -- he was also listening to an announcement about a project the Giants were doing to help the nation’s armed forces. It was this ballpark announcement that sparked his creativity and self-less gift of his own baseball skills. The following is an email he sent to friends and family to implement his COTA
fundraising activity.

April 19, 2009
It is Cole Spina here. I hope you are all doing great! I am sending you this email today because I want to help my friend Jessie Bucher and her family. Jessie is 12 years old and is very sick with a rare brain disease. Jessie, along with her Mother and Father had to leave their home and jobs and move to North Carolina to go to Duke University Hospital. Duke is the only hospital that performs the type of stem cell transplant that can save Jessie’s life.

Jessie left on New Year’s Day and has been in the hospital since then. Her brother Jeremy had to stay behind in the Bay Area with his grandmother, so that he can stay in school while his parents are at the hospital with Jessie. Jessie will have to stay at Duke for a year and will have years of follow up care when she comes home. The operation is very expensive.

I want to help Jessie and her family by raising money for transplant-related expenses like
living expenses in North Carolina and for plane tickets so her brother Jeremy can visit her
this summer.

So, I thought how can I raise the most money to help a family like Jessie’s? I heard about "Strikeouts for the Troops" at the Giants game, which raises money for injured soldiers and their families. I like to pitch, so I thought this would be a great way to help raise money for transplant. I decided to start "Strikeouts for Jessie”.

How it works is you can make a one time donation to the Children’s Organ Transplant Association, or you can donate per strikeout for the Little League season. If you pledge per strikeout, I will contact you at the end of the season, June 2009, with my recorded number of strikeouts and ask for your donation then.

Please make the checks payable to: COTA (Children's Organ Transplant Association) with ‘in honor of Jessica Bucher’ on the memo line.

To learn more about my friend, visit Jessica's website is www.COTAforJessicaAnnB.com. I am also including a "Strikeouts for Jessie" pledge form. If you want to help, please email or call me.

I am excited to see how much we can raise. At the end of the season all who donated will receive a letter telling you how much we raised.

Thank you for helping to make a miracle for my friend Jessie!

Cole

As Cole promised, he pitched strong all season and let his donors know how their support, and his hard work, paid off. Here’s what Cole posted in Jessie’s COTA Guestbook.

Cole Spina
Tuesday, 08/04/2009 - 8:22 am
Hi Jessie, Just wanted to say Hi and let you know, I am thinking of you and your family. "Strikeouts for Jessie" the fundraiser I started for you was very successful. There are a lot of people who are rooting for you and wanted to help. As of 8/1/09, I have sent in donations to COTA in honor of Jessica Ann Bucher totaling $800. (There are also a few more donations to come in.) I hope this helps you and your family. You are always in my prayers and I hope you come home soon. Your friend, Cole Spina

Jessica was transplanted in January and returned home to California just a few weeks after the end of Little League Season. At a garage sale fundraiser earlier this fall, she was able to thank those who have supported her family. To date, over $23,000 has been donated to COTA in Jessie’s honor due to the commitment of her community and to friends like Cole.

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COTA News

Time to Give Hope and Make Miracles

Although COTA is still a couple months from formally kicking off the Miracle Maker program, many groups have already begun their planning for activities and events. Across the country American Legion Departments and Posts; Kiwanis and Key Club Groups, and Optimist Clubs have committed to becoming COTA Miracle Makers. Here is one great example that is already underway. In Ohio, every Legionnaire has been challenged to give fifty cents – toward a goal of raising more than $60,000 statewide.

It’s not too early to start your planning. You can be a COTA Miracle Maker, too! Go to www.cota.org to find out how.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Free Services -- No Fee Charged or Percentage Taken from Funds Raised
The Children's Organ Transplant Association does not charge a fee or take a
percentage of the funds raised in honor of patients --100% of funds raised are available
for transplant-related expenses. COTA’s expertise and guidance is available to families and volunteers throughout the fundraising process.

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