Family Spotlight

The Best Holiday Gift

Last November, Brian and Emily Hoopes received a precious gift in the form of a long-awaited adoption. Their story began on Halloween 2008 when Baby Patrick was born in Michigan. The young Salt Lake City area couple adopted Patrick when he was just one-week-old, bringing him home to Utah a month later. From the outset of the adoption process, Brian and Emily knew Patrick was a very sick infant. They were told the baby only had a few centimeters of small intestine and until he could get an intestinal transplant, Patrick would require constant medical attention.

“Beyond knowing he would need lots of medical care we also knew Patrick’s life had been a series of miracles up until that point. We hoped those miracles would continue and we decided to forge ahead with hope, despite an uncertain future,” said Emily. Knowing the road ahead would be rocky given Patrick’s diagnosis of short gut syndrome, Brian and Emily joyfully initiated the adoption process and returned to Utah to their large network of family, neighbors and Church of Jesus Christ of Latter-day Saints friends. Their network of acquaintances expanded rapidly to include Patrick’s medical team of gastroenterologists, surgeons, nurses, pharmacists, dieticians, developmental specialists and many more medical professionals. This couple’s dedication and commitment to a tiny infant remained unwavering even as they discovered the harsh realities that laid ahead for each of them.

The specialists at Primary Children’s Hospital in Salt Lake City, Utah, told Emily and Brian they would need to go to Seattle Children’s Hospital, an 840 mile trip, to further investigate the possibility of a life-saving small bowel transplant. They made their first trip to Seattle in early 2009. That trip was successful and Patrick was listed for a small bowel transplant. That’s when the waiting began.

Just to maintain Patrick’s health while he waits for his transplant, the Hoopes’ pay co-pays for every doctor and therapist visit, and for every trip to the hospital emergency department in Salt Lake City. Sometimes Patrick is in the doctor’s office more than once each week. There are also co-pays for his medications; deductibles, and the costs of living at a hospital for a week or more at a time. According to Emily and Brian, the Hoopes family has had to tighten their belt because Emily’s current full-time job is taking care of Patrick.

Intestinal transplants are a fairly new procedure. With Patrick being listed for transplant at Seattle Children’s, Emily and Patrick need to travel to Seattle every three months for evaluations. Each visit involves airfare and food and lodging for at least a couple days. They also pay charges associated with seeing doctors outside of their insurance network. When the transplant call does come and they need to get to Seattle quickly, Emily and Brian may need to charter a $10,000 flight to get Patrick to the hospital within the narrow time frame allowed by the surgical team.

It became very apparent, very quickly, that Brian and Emily Hoopes needed help. Even though the Hoopes’ have health insurance coverage, they soon realized that regardless of how ‘good’ their insurance is, they are facing a huge financial burden -- in addition to the stress of Patrick’s medical care they face on a daily basis. In the midst of these difficult days, Brian and Emily heard about the Children’s Organ Transplant Association (COTA).

“With the amazing assistance that COTA provided, we were able to pull together a group of friends and family who are working together to raise funds for transplant-related expenses, and to raise awareness of the transplant journey our family was facing,” said Emily. Almost immediately, Emily became a regular contributor to Patrick’s website journal at www.COTAforPatrickH.com. And, just as quickly, bloggers got online and started reading, and responding to, this mother’s riveting words of gratitude and hope.

After Patrick’s transplant, he and Emily will need to stay near the hospital in Seattle for about six months. This family will split Brian’s income across two households in two states. Undoubtedly, their out-of-pocket insurance costs will skyrocket and they will have co-pays for bi-weekly biopsies; for anti-rejection medications, and for IV nutrition, feeding therapy and home nursing.

“When I consider the price of Patrick’s transplant journey, it is overwhelming. However, COTA has given us hope, making it seem that one more miracle is possible,” said Emily.

Emily continued, “We have witnessed many little miracles since we found COTA. Family, friends and neighbors have come together in amazing ways. Strangers in our community have reached out to us. Every little miracle gives us hope that a bigger miracle -- a transplant -- is in our future. We’ve always considered Patrick’s life a gift. We feel privileged to be his parents. Some may think we gave our baby a gift by adopting him, but the reality is that he is giving us the ultimate gift by being our son.”

The Hoopes family is getting ready for the holidays. They are grateful for the ongoing support their COTA team continues to provide; they are grateful for their COTA website Journal readers and Guestbook visitors, and mostly, they are grateful for the selfless gift an anonymous family will soon give to Patrick … the gift of life.

Truly the best holiday gift that can be given.

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

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Giving Options

Limit What You Owe At Tax Time

Believe it or not, you can decrease the amount Uncle Sam will get from you by April 15, 2010. Regardless of what type of gift you give, donating before the end of the year qualifies you for a charitable deduction -- if you itemize your deductions when filing your taxes.

How You Can Help: When deciding what type of gift to give, feel free to contact the Children's Organ Transplant Association (COTA) to learn more about our areas of service and current programs. If you do not wish to donate to a specific area, we also welcome unrestricted gifts, which allow us to designate your funds to meet our most pressing needs or to help patients with the greatest immediate need.

Ways to Give: You always have the option of giving cash or writing a check, but you may also use your credit card. You will receive a deduction in the year you charge your gift -- rather than when you pay the credit card company. You may also consider gifts of appreciated stock and real estate you have owned longer than one year. These types of gifts avoid capital gains taxes and you can usually deduct the fully appreciated value of the gift for income tax purposes. But unlike writing a check, these gifts take more time to complete. Be sure to plan ahead if you want to take a deduction for the current year.

For more information about planning your financial future, or supporting the Children’s Organ Transplant Association, call Rick Lofgren at 800.366.2682 or email him at .

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Ways You Can Help

Holidays and Baked Goods Go Hand-in-Hand

Planning a new fundraiser may be the last thing your community campaign committee members think they have the time for, but there may be a relatively easy way to raise funds taking advantage of what your volunteers are already doing. For instance, if your volunteers are doing holiday baking, why not ask everyone to make an extra batch or two of holiday treats and hold one of the most classic fundraisers of all … a Bake Sale. Find an area of high pedestrian traffic, such as outside a grocery store or at a busy area near a mall, and tempt the taste buds of hungry holiday shoppers.

Simply selling baked goods will no doubt help generate funds; however, with a little creativity you can add some extra flavor, and dollars, to a Holiday Bake Sale.

Here are some twists you might want to incorporate:

Musical Cakes
Liven up your Holiday Bake Sale with a game of musical cakes. Simply mark a number of squares on the ground using sidewalk chalk. Leave one square blank or color it differently. Charge each an entry fee knowing that the $1-$3 range is a workable price. Just like the traditional game of musical chairs, participants walk in a circle stepping on the squares as the music plays … do you hear “Jingle Bells”? When the music stops, the person standing on the one blank or colored square is the winner of a plate of cookies, a loaf of bread or a cake. This works best at sales where there is a crowd such as a festival or sporting event.

Cake Walk
Similar to Musical Cakes, a cake walk uses numbered squares. Participants walk in a circle stepping on the squares as the music plays. When the music stops, draw one number out of a bowl containing slips of papers with numbers corresponding to the numbers on the squares. The person standing on the square that is drawn is the winner. This works best at sales where there is a crowd such as a festival or sporting event.

Holiday Cookie Sales
Have your best bakers team up with your best cookie decorators to make a variety of holiday treats. Then offer these items to the public just before the holiday. Usually cookies are sold by the piece or pound and the offerings are limited to holiday favorites (like decorated sugar cookies and brittles at Christmas time). This activity appeals to the many people who want homemade cookies, but who do not have the time to make them.

‘Bakeless’ Bake Sale
Are your COTA volunteers too busy to bake? Perhaps they would rather make a donation instead of baking the sales items. Send volunteers the message below. Then ask that they send an ‘invitation’ to the sale to their friends. You will potentially raise funds two ways … from people who would rather donate than bake and from people who would rather donate than eat the extra calories.

You are invited NOT to bake a cake, pie, cookies or brownies. You do NOT have to find your grandmother’s famous cookie recipe. You do NOT have to clean up your kitchen. And you do NOT need to stand in the heat/cold/rain to sell the baked product. All we ask is that you write a check to COTA. You will benefit by saving time and calories AND you will help give hope and make miracles for COTA families!

Here’s our Bakeless Baked Good Price List to help you make your donation:
Cupcakes: Two for $1
One Dozen Brownies: $3
Chocolate Chip Cookies: 50¢ each
Pie: $5 to $10
Fudge/Candy: $2 per pound
Cake: $5
Specialty Dessert: $15
Snack Mix: $3 a bag

Celebrity Baker/Pastry Chef
Another delectable idea for a Holiday Bake Sale is to invite a guest baker or dessert
chef to hold a cooking demonstration or a presentation during your sale. You could even
ask them to judge a Holiday Bake Off. If space allows set up a podium and chairs for the demonstration. Be sure to offer samples to those who spend time as participants.

Baking Supplies
Invite a sales consultant from a home-based sales company such as Pampered Chef or Tupperware. Allow them to set up display tables and demonstrate how to use the products they sell. Ask the consultants to give a portion of their sales proceeds and, if applicable, a matching gift from their company to COTA.

We hope these examples help you start thinking about some updated fundraisers
for the holidays. Remember, the key to any successful fundraiser is to include as many profit-making offerings as you can. Get creative to help ‘sell some dough to make
some dough’.

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COTA News

COTA Reports Record Number of Children Successfully Transplanted

In the 23 years COTA has served transplant-needy families, more than 950 COTA patients have been transplanted.

“COTA’s unwavering commitment to giving hope and making miracles for each patient family is underscored by the organization’s nearly 150,000 volunteers and contributors who, during the past 23 years, have generously donated their time and their money to COTA,” said Rick Lofgren, COTA President and CEO. “These volunteers and contributors are indeed heroes; they are our Miracle Makers.”

An important benchmark for any non-profit organization is the percent of expenditures used for program-related activities. In the past year, COTA reported that 89% of COTA’s operational expenses were directed toward patient care and organ, tissue and marrow donor education program activities.

“Giving Hope … Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said Scott Price, COTA’s Chairman of the Board. “On behalf of COTA’s Board of Directors, it is my pleasure to report that more than $3.7 million was raised to help meet transplant-related expenses of COTA patients during fiscal year 2009. COTA’s Board of Directors is committed to ensuring that every dollar donated for our patients is used for patient care.”

COTA has become the premier organization providing fundraising assistance to families facing a life-saving transplant by assisting some 1,400 patients. Families from throughout the country, representing every ethnic, economic, religious and social background, have worked with COTA. Their volunteers and supporters have donated nearly $55 million to assist with transplant-related expenses.

Since its founding in 1986, two of COTA’s hallmarks are that patients are not charged for services and every dollar contributed in honor, or in memory, of COTA patients is used for transplant-related expenses. “In addition, COTA augments the funds our volunteers raise by providing a challenge grant of up to $10,000,” said Price. “This COTA program has distributed more than $2,600,000 to COTA fundraising campaigns since 2000.”

“COTA was founded in 1986 when one child from Bloomington, Indiana, needed a liver transplant to survive. The local community rallied around this child’s family and raised
more than $100,000 in two months’ time. Sadly, that little boy died before a liver became available, but their efforts were not in vain. I expect we will be celebrating another milestone when we announce the name of our 1,400th patient in the coming weeks,”
said Lofgren.

Along the way COTA’s team of professionals and these families have shared tears, conquered huge obstacles, hoped, and together, have celebrated more than two decades worth of miracles.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Services at No Cost and a Challenge Grant Program
The Children's Organ Transplant Association does not charge for its services -- 100%
of funds raised in honor of patients are available for transplant-related expenses. To
encourage volunteers and contributors, COTA established the Challenge Grant Program,
and more than $2.6 million has been awarded with 100% of all Challenge Grant funds used
to meet transplant-related expenses. All funds raised in honor of patients are used for patient transplant-related expenses.

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