Tag Archives: COTA

The Best Holiday Gift

The Children’s Organ Transplant Association is an organization to which we have guided many of our donors over the last several years. Last week, they provided us with a beautiful holiday story about one of the children that donor funds helped. In the spirit of the season, I thought it appropriate to share here.

-Sara

During a season filled with lists and wishes, the holiday gift one Utah couple hopes for is one often taken for granted: a healthy family.  For this family, one wish has already been granted.  Now they wait for the ultimate gift … the gift of life.

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 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.

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A Letter from the President

We’ve been doing some updates to our site lately, and part of that is extending a message to all of our supporters. In case you haven’t had the chance read it, I’d like to share it with you here.

Dear Friends & Supporters of Operation Kids,

You have made a measurable difference in the lives of tens of thousands of children in 2008. The donations we received helped children in local communities and across the globe. We look back with gratitude on thousands of generous donors and nearly $2 million in support received, managed and dispersed – all thanks to you.

I want you to know that each donation has made a difference this year in the lives of tens of thousands of children. Your reach has been broad, from supporting those lovable kids who are part of Best Buddies, to providing important financial assistance to children and families clinging to hope as part of the Children’s Organ Transplant Association.

You have changed lives in Ghana through the Forever Young Foundation and given back a smile through Operation Smile. You crossed the globe delivering benefit through Vitamin Angel Alliance (critical childhood doses of key vitamins) and provided micro-credit loans through Enterprise Mentors. You have made kids safer in your own communities through the McGruff Safe House Network and the National Center for Missing & Exploited Children.

You built the Edible Schoolyard, funded grants for the Foundation for Science & Mathematics Education, funded after-school programs for New Orleans Outreach, and rebuilt two playgrounds in New Orleans. You brought music education to lower income kids, helped families with children suffering from Autism and helped improve the health and futures of kids through the American Heart Association and Boys & Girls Clubs of America – and that’s just the beginning.

With your continued support, we look forward to addressing more critical needs and bringing an even higher level of accountability and results.  

2009 begins with assurances that we will continue our commitment to ensure that 100% of every dollar you give to Operation Kids will go directly to support proven and effective programs benefiting children.

As always, I love to hear from our supporters and what is on your minds.

Regards,

Rick B. Larsen
President
Operation Kids

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Give Smarter (Part III)

Continued from yesterday’s post

I would be remiss if I did not talk a moment about money. Donating money is what most people think of when they think of charitable giving and there are a couple of things, three really, that you need to know and think about when considering a cash donation to a charity. Specifically;

1. How generous we really are in this country

2. Where most of the cash donations come from

3. The average efficiency of charitable organizations.

 There are needs in this world that require funding. While some needs can be met with time and talent, others require cash. We would all like to be able to give enough to make a difference: some people have greater resources than others.

 Sometimes we turn on the news and see a major gift from a Warren Buffet or Bill Gates and we are overwhelmed at both their resources and their generosity. We see a major corporation or foundation donate millions to a cause and we feel that perhaps there is nothing we can add to the effort; we think…”my donation hardly compares to that.” May I tell you something that will no doubt surprise you?

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Giving Hope … Making Miracles (Part III)

The Saunders’ story is still unfolding – one miracle received and now they hope for a second. Martin recently wrote in the boys’ COTA online journal: “We continue to ask for prayers for both boys as they are still healing and will be for some time to come. But, we are so incredibly thankful for the progress made so far. Thank you to all of you, family and friends, for your many prayers, thoughts, and ways you’ve shown us love. We are eternally appreciative.”
braden-and-trevin-web.jpgBrayden and Trevin Saunders are two of the more than 1,200 patients COTA has helped since its inception 22 years ago. During this time, COTA has helped raise more than $48 million for patients’ transplant-related expenses. Along the way, we have shared tears, helped conquer obstacles, celebrated miracles, and always … we have hoped.

If you would like to learn more about Brayden and Trevin Saunders, please go to www.cotaforbraydenandtrevins.com, or you can visit www.cota.org for a complete list of children who are waiting for their miracle.

Hoping for miracles,

Rick Lofgren
President of COTA
rick@cota.org

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Filed under Initiative: Charitable Giving & Accountability, Initiative: Children's Issues, Initiative: Nonprofit Operations, Whole Child

Giving Hope … Making Miracles (Part II)

Martin and Gina share their boys’ story Brayden and Trevin Saunders

In October of 2006, both were diagnosed with PNP Deficiency. They are two of just 55 diagnosed cases worldwide. A bone marrow transplant could possibly correct the T-cell deficiency in their immune systems. So we met with specialists at Duke University Medical Center. Our insurance battles began almost immediately.

Six months later, while organizing bone marrow drives to find donors for the boys, we began to recognize how devastating the transplant process is to a family. We started to see the financial toll the transplant would take on our family. We called COTA. Within weeks, our friends, family members and colleagues launched a COTA campaign.

July 5, 2007, was a special day – it was Transplant Day! Both Brayden and Trevin received cord blood transplants within a two-hour time span. Both boys did very well. However, the transplants are not as critical as what happens afterward, so the waiting game began.

Within a month, it was clear that Brayden’s transplant was off and running. However, Trevin’s was not going so well. We were devastated to learn that he may need a second transplant.

Brayden and Trevin celebrated their birthdays in our North Carolina apartment on September 2nd and October 6th. The boys received gifts by mail and many wishes were posted on their COTA website guestbook, but due to their compromised immune systems, visits were limited. These were bittersweet celebrations.

Finally, in late October, we got good news … Brayden had 10% donor cells. Just a bit earlier, the doctor stopped Brayden’s immunosuppressant drug regime to see what would happen. The results were the miracle we had hoped for.

On November 14, 2007, Trevin received his second transplant. Our journey is not yet at the end. So we wait … again. And we hope for a miracle … again.

Visit  www.cotaforbraydenandtrevins.com to learn more.

More on this story to come…

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Filed under Corporate giving, Initiative: Charitable Giving & Accountability, Initiative: Children's Issues, Initiative: Nonprofit Operations, Whole Child

Giving Hope … Making Miracles

Sometimes we receive personal stories from our partner charities that are incredibly touching, ones that remind us that we truly can make a difference. The following story, sent to us by Rick Lofgren, President of the Children’s Organ Transplant Association, is one of those stories…

Giving Hope … Making Miracles

Brayden and Trevin Saunders

The Children’s Organ Transplant Association (COTA) is using this phrase throughout 2008 as a way to recognize the work we do and to acknowledge the support we receive from organizations like Operation Kids. Over the past year, COTA’s work has been literally life-saving. Here is one story about a COTA family who has experienced one transplant miracle… and is now waiting for a second.

Brayden Saunders (10) and Trevin Saunders (8) are from Huntington, West Virginia, but are currently living in a small apartment in Durham, North Carolina. The reason for their temporary relocation: side-by-side cord blood transplants last summer at Duke University Medical Center. Over a year ago, Martin and Gina Saunders were told their sons had an extremely rare genetic immune disorder called Purine Nucleoside Phosphorylase (PNP) only known hope for beating this disease, a bone marrow or cord blood transplant. One transplant, with a price tag of $300,000, is financially crippling for any family, even those with adequate health insurance. The Saunders, however, must multiply everything by two.

Martin and Gina will be sharing their story soon…

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