Tag Archives: Health

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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Helping Families in Need

This spring, Operation Kids teamed with musical artist Collin Raye to raise awareness and funds for families of children facing extraordinary medical expenses. One of the songs on Collin’s new CD Never Going Back, “She’s With Me,” was written as a tribute to his granddaughter, Haley, who suffers from an undiagnosed degenerative neurological disorder, helping him understand first-hand the challenges that parents of children with serious medical conditions face.

Over the course of two months many supporters helped raise several thousand dollars to help with the medical and logistical costs for families facing extreme challenges. This week, we sent a check to the Children’s Organ Transplant Association (COTA), an organization that helps provide funding assistance to families of children who need or have had a life-saving transplant. We have worked with COTA in the past and know that the money will make a great impact in the lives of several families, thanks to your generosity.

As part of the campaign, we also asked for people to submit their stories to share with others who were going through similar experiences. Several of you posted your stories on our online story hub here. We invite you to read them and share your own if you have one.

We sincerely appreciate people like those who in these economic times are so generous and willing to help where help is so desperately needed. As we receive the stories of the families who received funding as a result of your donations, we will be certain to share them with you.

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Running for Healthy Kids

Tanner  Bell (Ragnar Co-Founder), Chad Iverson, Curtis Bennett (OC Tanner) and Don Stirling (Operation Kids)

Tanner Bell (Ragnar Co-Founder), Chad Iverson, Curtis Bennett (OC Tanner) and Don Stirling (Operation Kids)

Since 2005, Operation Kids and Ragnar Events have partnered to try and make an impact on youth health and fitness. Over the past year, the partnership has developed into a national campaign, where Operation Kids partners with Ragnar Event for each Ragnar Relay to benefit local youth health and fitness campaigns.

For the 2009 Ragnar Relay Wasatch Back, we tried something new – several generous businesses donated some wonderful gifts to those runners and supporters who raised funds or donated toward this year’s cause – Best Buddies Utah, where we worked to raise funds for the  Best Buddies 5k walk/run for intellectually disabled children.

We had hundreds of donors – giving anywhere from $5 to $500, who were excited to run for a cause. One of the donors, Chad Iverson, was the lucky winner of the grand prize – a $3,200 Tag Heuer watch from OC Tanner.

Yesterday, we had the opportunity to present Chad with this gift and thank him for his generosity at the OC Tanner store downtown. It was a great experience to meet him and thank him first-hand. We don’t  often get to meet our donors face-to-face, and when we do, it is always wonderful.

On behalf of Ragnar Events, Best Buddies Utah and Operation Kids, I’d like to say “thank you” to all those who donated who helped us raise thousands of dollars for a worthy cause – to help intellectually disabled kids stay healthy and fit.

We can’t wait to see you in Logan next year for the 2010 Wasatch Back race! For those of you from out of state – we will see you at several of the upcoming Ragnar Relays between now and November.

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Tackling Childhood Obesity

How do you help your children lead an active, healthy lifestyle?

Like so many parents, I spent time this week in the company of a couple hundred 6th graders for a commencement program. It is an amazing experience to watch, listen and remember.

One of the teachers, tasked with reading the names of students who achieved special recognition during the year, announced some remarkable accomplishments including: 100% scores in math and science on state-required testing, perfect attendance and even a “friendship” award. But the one that caught my attention like never before were the Presidents Council on Physical Fitness awards.

My first thoughts were, “I am glad they still do that,” and, based on an awareness that has come to me in my current capacity; “this may be one of the most important awards.”

According to the CDC “the prevalence of obesity among children aged 6 to 11 more than doubled in the past 20 years, going from 6.5% in 1980 to 17.0% in 2006. The rate among adolescents aged 12 to 19 more than tripled, increasing from 5% to 17.6%.[1] Obesity is the result of caloric imbalance (too few calories expended for the amount of calories consumed) and is mediated by genetics and health.[2] An estimated 61% of obese young people have at least one additional risk factor for heart disease, such as high cholesterol or high blood pressure.[3] In addition, children who are obese are at greater risk for bone and joint problems, sleep apnea, and social and psychological problems such as stigmatization and poor self-esteem. 

Obese young people are more likely than children of normal weight to become overweight or obese adults, and therefore more at risk for associated adult health problems, including heart disease, type 2 diabetes, stroke, several types of cancer, and osteoarthritis.  Healthy lifestyle habits, including healthy eating and physical activity, can lower the risk of becoming obese and developing related diseases.

There are also 10 key strategies to preventing youth obesity at this same website. I would encourage you to take a look.

The truth is, this was not an issue when I was 12 years old. Maybe we played more or ate differently, I really don’t know. But I do know that today this is an unwelcomed reality that demands our attention. When people ask me why Operation Kids has included this on our list of “most pressing issues,” I cite the statistics above.

It should always be mentioned on this topic, that this is not an aesthetic issue, but rather a critical health issue. I have heard it addressed from every angle. Of course our greatest concern is the health and happiness of our children; the long-term issues associated with obesity-related illness are not pleasant and we would not want anyone, especially our children, to have to deal with them. I have also heard it from an economic side; diabetes is a very expensive disease to treat and if enough American’s are or become diabetic, it could further bankrupt the health care system. If one side does not sway you, perhaps the other will.

The challenge is, how does one appropriately “lead out” on this issue? No parent wants to be told their child is overweight. The stigma attached to a statement such as that strikes at the heart of self esteem in our society. One again, the issue is not appearance, it is health and well-being.   

Another challenge in addressing the issue is the fact that the lifestyle component begins at home. Maybe the parents are not living a healthy lifestyle themselves. While I value the fact that caring educators encourage and teach our children to eat right and be healthy, the real impact comes at home where that behavior is modeled most.

This has been on my mind a lot lately, particularly as we ramp up our involvement with Ragnar Events and the Ragnar Relay Series. For five years now we have been part of their commitment to give back to the communities they run through, specifically in ways that promote health and fitness in kids.

If you have been successful at helping your children achieve an active lifestyle and healthy habits and weight, I would love to hear from you. Tips will be gladly shared with other parents who may be struggling with the issue.  

-Rick


[1] Ogden CL, Carroll MD, Flegal KM. High Body Mass Index for Age Among US Children and Adolescents, 2003-2006. JAMA. 2008;299(20):2401-2405.

[2] Daniels SR, Arnett DK, Eckel RH, et al. Overweight in Children and Adolescents: Pathophysiology, Consequences, Prevention, and Treatment. Circulation. 2005;111;1999-2002.

[3] Freedman DS, Dietz WH, Srinivasan SR, Berenson GS. The relation of overweight to cardiovascular risk factors among children and adolescents: the Bogalusa Heart Study. Journal of Pediatrics 1999;103(6):1175-1182.

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14 Days and Counting … Ragnar Relay Wasatch Back

This week has been quite the week at Operation Kids, as we prepare for the Ragnar Relay Wasatch Back – which starts in just two weeks.

Four years ago, Operation Kids began working with Ragnar Events in a joint effort to improve children’s health and fitness along the Wasatch Back relay route. When Ragnar launched the Ragnar Relay Series and began to expand nationwide in 2006, they asked us to join them as their national charity partner.

Over the last year we’ve really ramped up our efforts with a goal of raising hundreds of thousands of dollars a year for children’s health and fitness programs in the 11+ metropolitan areas through which a Ragnar Relay runs. This year, we are celebrating our biggest Ragnar fundraising effort yet at the Wasatch Back relay – which runs 188(ish) miles from Logan to Park City, Utah.

It is significant because it’s virtually in our own backyard, but also because the charity to which we’ll distribute funds is one of our long-standing “OK-Approved” charities, Best Buddies, where the funds will go to provide opportunities for kids with intellectual disabilities and their buddies along the Wasatch Front to participate in their own Best Buddies Utah 5k Walk/Run (scheduled for spring 2010), as well as to provide seed money for new chapters along the race route.

It’s easy to take for granted that I (were I in good shape and desired to do so) could enter a race – virtually any race – or lace up my running shoes and run out my door and down the street – but many kids with intellectual disabilities never get those same chances. I am so excited to work to try and make that possible for hopefully thousands of kids next spring.

As we gear up a great fundraising effort, we have generated dozens of spreadsheets, checklists, e-mails, field trips and a lot of formal and informal meetings. Operation Kids is helping Best Buddies put on a spectacular breakfast at Exchange 30 Saturday as one of the fundraising initiatives. I can’t wait until I can share the menu – it’s not your typical fundraising breakfast, for certain!

I love working on projects like this – to see everyone so energized about an event that is going to help raise money for such a great cause. There is a vibe around the office that is almost like what you felt just before Christmas or summer vacation as a kid – a sense of great anticipation and eagerness to see it all come to fruition.

You can keep up on all the crazy progress by following us on Twitter @OperationKids or keep an eye out on the  blog for pictures, updates and a recap of the fundraising success.

-Sara

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Run. Drive. Sleep? Repeat. Help Kids in Utah.

5K Walk-Run- A Buddy Pair enjoys the Best Buddies 5K

What would it take to get you to run 188 miles with 11 of your closest friends over the course of two days?

For thousands of people next month, it takes nothing more than the promise of doing something that makes people say, “Wow,” as they gear up to run the flagship 188-mile Ragnar Relay Wasatch Back from Logan to Park City, Utah June 19-20. We are particularly excited about this race because it’s in our backyard and gives us another opportunity to help children in our own community. We will distribute the donations raised at this year’s Wasatch Back relay to Best Buddies Utah to enable buddy pairs to participate in the Best Buddies 5k Run/Walk in spring 2010.

“Very few people with intellectual disabilities ever have the opportunity to run or walk in a community event,” Justin Haskell, director of Best Buddies Utah, told us. “This is a great opportunity for buddies to experience a great event, while also helping them learn about and embrace healthier lifestyles.”

Runners are a passionate, and charitable, group – and I’ve had a few phone calls from this year’s runners voicing their enthusiasm and getting the chance to share their love of running with intellectually disabled youth. Their enthusiasm is contagious. All it takes is $30 raised or donated from each runner to sponsor a buddy pair’s participation in the event. Additional donations will provide seed money to start up additional Best Buddies high school chapters along the race route, to further enhance the lives of youth with intellectual disabilities.

Best of all, several Best Buddies members and volunteers will be joining us at the start and finish lines to cheer on the crazy runners who will temporarily swap their sanity to run the relay of a lifetime

It promises to be a weekend free of dull moments and full of heart-warming enthusiasm.

-Sara

p.s. if you are interested in helping a team’s fundraising efforts, click here or e-mail us at info (at) operationkids (d0t) org.

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181 Miles or Bust – Running to The Bronx

My fellow Operation Kids colleague Don Stirling and I just returned from representing Operation Kids at the Ragnar Relay New York race. This first-year event was a rousing success.  More than 75 teams competed in the Kingston (just south of Albany) to New York City race, running through some of the most beautiful country imaginable.  The Friday start was a gorgeous day; then clouds and cooler temperatures rolled in overnight for the remainder for the race.  The runners said they actually preferred the cooler temperatures. 

Don and I had the opportunity to talk with many of the runners both during and after the race.  They couldn’t stop talking about what a great experience they were having, and how they couldn’t wait to run again in next year’s race.  Many also planned to run in other upcoming Ragnar races in New England and Washington, DC.  Those sentiments came as no surprise; in every race we’ve attended we hear the same things from the runners.  And then the race grows exponentially the following year. 

What is it about running a Ragnar race that makes it so cool?  Is it the physical challenge of the race – each participant running 15-20 miles, divided up into three legs, with a few hours of rest between legs?  Is it the unique experience of running at night? Or getting to traverse 200 miles of some spectacular country?

It’s probably a little of all of the above, though I suspect the biggest single factor is how fun it is to do an all-nighter with 11 friends in a crazy running experience over several hundred miles.  Being together at the end, running across the finish line as a group, often in costume, to celebrate having conquered the event definitely provides an adrenaline rush unrivaled in other races.  For many teams, where they finished in the standings is inconsequential. The fact is that they finished and had a great time together. It’s no surprise they keep coming back.

We are there because Ragnar runners are encouraged to donate to Operation Kids as part of their race experience.  We, in turn, forward all the funds we raise to local charities in the race community that provide health and fitness programs to underserved children.  It’s a great opportunity to fund effective programs serving needy and deserving kids.

Many Ragnar runners are still just learning about the Operation Kids connection, but every time we tell the OK story, the runners are interested in the opportunity to help. We look forward to taking more opportunities to explain the great programs we support, and to giving runners another great reason to run.  

For Don and I, our most cherished memory from the race may be the opportunity we had to serve as volunteers.  I staffed Exchange 13 in front of the local Baptist church in Highland, New York until 1:30 am., while Don was a few miles down the road at Exchange 14.  It was great meeting and assisting the runners while making sure that our section of the race was working smoothly. It was a great time – I can’t wait to do it again next race.

We’ll see you at Ragnar Relay Wasatch Back in 4.5 weeks!

Here are some experiences Ragnar Relay New York runners have posted on their own blogs:

Run, Drive, Sleep … Repeat. Ragnar Relay!
Rangar Relay – by Sohail
Jane’s Journey – Ragnar Relay New York
The Team – Ragnar Relay 181 Miles

-Steve

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