Tag Archives: children’s issues

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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Perfection Not Required

I’m well aware of the pressures parents put on themselves to be perfect – though fortunately my children are too young to roll their eyes at me or tell me that I humiliate them every time I put the trash out in my bathrobe and fuzzy slippers. Yet, as I potty train my toddler or get up to feed the baby at oh-dark-thirty, I am constantly critical of how well I’m playing the role as the adult who shoulders the incredible burden of bringing up the next generation.

I have a laundry list of parenting faults – I’m a little high-strung, I hate to mop the kitchen floor (negating any 30-second-rule for fear my kids will die of whatever has taken up residence there), I don’t find the emptying of an entire roll of toilet paper or tube of toothpaste particularly humorous and sometimes I put the pillow over my head and mutter, “if I ignore you can I sleep just 20 more minutes?”

And yet, my kids are lucky – they have parents who love them and are fiercely devoted to giving them the best life we possibly can. And that is enough perfection for them.

It is also the reasoning behind this month’s National Adoption Month theme: “You don’t have to be perfect to be a perfect parent: There are thousands of teens in foster care who would love to put up with you.”

Last month, President Obama declared November as “National Adoption Month”, to “honor those families who have strengthened America through adoption, and we recommit to reducing the number of children awaiting adoption into loving families,” and to “renew our commitments to children in the foster care system.”

The observance of National Adoption Month is more than just a celebration of adoption, it is a cry for more than 120,000 children who are in foster care awaiting a permanent family and an end to a life of turmoil. These are children who are not in the “system” by their own choosing, but have become without permanent home, family or support through tragic circumstances and the unfortunate choices of others. National Adoption Month aims to focus on the needs of these children, nearly 25,000 of whom age out of the foster care system each year and to remind each of us of our responsibility to the rising generation.

Every year, we are losing alarming numbers of these young adults who have “aged out” to cycles of poverty, crime, incarceration and death at far above the rate of their peers. Without a support system to prepare them for life on their own, many face an uphill battle that is rarely won.

It is this alarming fact that has lead AdoptUsKids, a  cooperative agreement between The Children’s Bureau, Administration for Children & Families and the U.S. Department of Health & Human Services, to highlight the message of “anti-perfection” – that even the quirkiest of us have something to offer a teen in foster care. Their PSA campaign reminds us all that each of us – foibles included – can make a difference in the life of a child in foster care by being a mentor, a foster family or by giving a foster child into a permanent, loving home.

We work with many individuals and organizations who champion this same message. This past year we helped Christmas Box International with their Lifestart initiative to help arm teens aging out of foster care with basic necessities. We champion the ideas set forth by Judy Cockerton of The Treehouse Foundation for their ability to make an impact. And we embrace the idea of reminding us all about the “forgotten children” who live among us.

At the very least, we ask that you hug a child in your life today. You’re a far greater parent, example or mentor than you realize. After all, you don’t have to be perfect to be a perfect parent.

-Sara

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Honoring The Mothers of Angels

I’ve spent a good deal of time silently weeping at my desk in weeks gone by as I have read the dozens of stories that have come in or been posted onlineas part of our two-month fundraising campaign with Collin Raye to raise money for seriously ill children and their families.

With Mother’s Day approaching, the volume of tears only threatens to increase, as people – mostly mothers – continue to share stories of brave, heroic children faced with a burden greater than anyone should ever be asked to bear. More than that, I think of what their mothers must endure each day – of the sacrifices they so willingly make to ensure the best medical care, the best quality of life, the best childhood possible for their very ill children – many of whom will never see adulthood. I wonder if I could be that strong if it was my daughter facing so many uphill battles.

This post is dedicated to those mothers – who face every day with determination, love and a love that runs deeper than anything many will ever comprehend. With that, I share some of the touching and inspiring stories we’ve received over the past couple of months:

kylerKyler & His Contagious Smile. Kyler was 4 days old when he underwent his first, of several, open heart surgeries … He underwent his 4th open heart surgery and 2nd stage of his heart “rewiring” in April, 2008.  We have managed to stay out of the hospital for almost a year!  Kyleris still not able to eat anything by mouth. He is crawling now andwill stand andpull himself up to things. He will NOT standunassisted, but that, too, will come withtime. He was on continuous oxygen until about a month ago, and now he is continuous at night, but only needs it now and again during the day … I thank GOD everyday for my kids. Whether they fight anddrive me up the wall at times, I am SO thankful that I have them here with me.(Read Kyler’s entire story here.) 

yxmtyakbmthogzj-58x43-croppedBennie’s Friend. Back in the day, My friend’s brother had Cerebral Palsy, Spina Bifida, and Developmental delays due to his medical conditions.  He was unable to speak but he could make his wants known by signing and gesturing.  The family took Bennie everywhere we went. When we went to the movies, to the amusement parks, picnics, and to neighborhood parties,  Bennie was always there, in his wheel chair.  He was just one of the kids.  We rode on his chair, played catch the ball, and never excluded him nor did we let others make fun or tease him.  Bennie was our Bennie and he was cool! (Read the rest of Bennie’s story here.)

hpim16511Our Incredible Journey. Two years ago, we adopted a newborn baby. Told he was healthy, we took him home and enjoyed every moment of his precious life. He was born at 27 weeks, spent 5 weeks in the NICU, andwas given to us. We thought things were going so well…until we found out his birth mother and he tested positive for copious amounts of cocaine at his birth … (Read the rest of of the story here.)

May every one of these families be blessed with love, hope and peace – and may their mothers get all the honor they deserve this Mother’s Day.

For more incredible stories of children and families touched by serious illness, click here.

(If you want more information about the “She’s With Me” fundraising campaign, running through Mother’s Day, click here.)

-Sara

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Donations Help Get Child Predators Off the Street

When you don a tuxedo and sit down for a fancy dinner at a black-tie fundraising gala and you make a donation, do you know where it goes?

I’ve sat through more than a few black-tie fundraisers in my lifetime, and while many have been amazing, in many more cases I’ve often wondered if they money pledged really made an impact beyond the evening’s food and entertainment. It is one of the things I’m terribly conscious of each year as we plan the annual Operation Kids Lifetime Achievement Award Galas. Part of our pledge to donors is that we follow their money all the way through to the end.

Consequently, our office was full of excitement late last week as we learned that a major child pornography sting had successfully brought in more than a dozen offenders, with as many as 18 more arrests pending, as a result of a sizeable Operation Kids donation to the Utah Internet Crimes Against Children Taskforce (ICAC) – one of the nation’s premier internet predator law enforcement agencies.

The money came directly from the generous donations of corporations like XanGo and America First and the more than 800 people who attended our 2008 Lifetime Achievement Award Gala, honoring John Walsh, in October.

 The ICAC team was able to fund the sting as a result of the donation. Each one of the donations played a role in the 14 arrests, seven search warrants, 37 computer seizures and 26 investigations launched into trafficking and solicitation of child pornography and underage sex.

“”We were able to get to these individuals sooner than later because of the extra funds,” -Rhett McQuiston, ICAC Commander

Dozens of predators are off the streets. Hundreds, likely thousands, of children are safer today because of the work ICAC does and because of the generosity of individuals and companies last fall.

This is why I come to work every day. This is why I believe in what Operation Kids does – because it works. Whether it is a $10 donation or a thousand dollar donation, every dollar makes an impact in a child’s life – and we strive to show the donor how.

 For further details and information on the sting, here are some great articles:

“Child Porn Sting Bankrolled by Private Foundation”

“Authorities Arrest 14 for Child Pornography” (another version of this story can also be seen here and here)

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Collin Raye and OK: Donate. Download. Help Kids.

Join Collin Raye & Operation Kids to help kids facing extraordinary medical expenses

I am excited today to launch one of our most exciting fundraising initiatives to date. Operation Kids has teamed up with singer/songwriter Collin Raye to help him use his new song “She’s With Me” to raise funds for a cause near and dear to his heart: children and families facing extraordinary medical conditions.

Collin’s Story:

“She’s With Me” is a tribute to my granddaughter, Hailey,  very, very special – and very ill with a neurological condition that no one’s been able to diagnose, and it’s regressive … for six years, I’ve been having this in my heart. It’s very hard to write about things like this, because nothing is ever good enough for her, and it’s hard to put into words how you feel.

The idea of “She’s With Me” struck me about a year or so ago. Thinking in this life she can’t do anything for herself. She comes and goes because she’s with me, and then I related it to the after life thinking, well, if I’m lucky enough to ever be standing in front of the Lord or St. Peter … maybe, she’ll be standing there and say, “Well, it’s okay, because he’s with me.”

Collin has been a tireless advocate for Hailey and realizes the extraordinary toll that a child’s medical condition and the resulting expenses can place on a family – especially in such a terrible economy. That is why he has joined with us to raise funds for organizations helping these children and families to be able to get treatment, transportation and housing dictated by often long, expensive hospital stays.

How to Help.

Donate.  A $5 donation helps children and families helping extraordinary medical expenses. For your $5 donation, you receive a complimentary download of Collin’s new song, “She’s With Me” – not yet available in stores.

Share. Share Collin’s story and this campaign and help children and families in YOUR CITY. The metro area that raises the most money over the next 60 days will have a portion of the money raised stay in that city to benefit programs for local children and families receiving medical treatment. Use this link to e-mail this to your friends and family, or this link to share it via a blog or other social networking platform.

Contribute. Do you have a child facing extraordinary medical treatments and expenses? Have you been helped by the generosity of others? Does “She’s With Me” inspire you to make a difference?

Share your stories with us in our online community. Or, send us an e-mailwith your story, photos or a link to a YouTube video that tells your story and help us spread the word of the tremendous obstacles families with seriously ill children face.

Twitter. Join us on Twitter to spread the word. Copy and paste one of these Twitter messages to send to your followers:

$5 helps a child facing extraordinary medical expenses & gets you @collinraye new song “She’s With Me.” Donate now http://tinyurl.com/d5famh

Collin Raye fans: Get his new song “She’s w/ Me” free by helping @collinraye help kids & families. Info: http://tinyurl.com/d5famh

Facebook.Use your Facebook status to show your support. [Name] needs your help: $5 helps a child receive medical care and gets you a free song http://tinyurl.com/d5famh.

We have two months to make a difference in thousands of children’s lives. Together, we can do this.

-Sara

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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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Operation Kids In the News: Honoring John Walsh

We wanted to share with you some of the coverage regarding the donations made at the 2008 Lifetime Achievement Award Gala, honoring John Walsh.

Deseret Morning News: $250,000 Donated to Internet Crime Unit 

“It’s exciting,” Utah Attorney General Mark Shurtleff told the Deseret News on Tuesday. “We’ll use a little bit toward equipment. The majority of it will be used for overtime to put cops behind computers to go after these guys.”

Salt Lake Tribune: $250,000 Grant to Help Fight Web Crimes

The state has received a $250,000 grant for fighting Internet crimes involving children. The Salt Lake City nonprofit Operation Kids made the donation this month to the Utah Internet Crimes Against Children Task Force.

Look to The Stars: Operation Kids Honors America’s Most Wanted Man

Operation Kids honored John Walsh, host of America’s Most Wanted, last Saturday, October 11, at its Annual Lifetime Achievement Award Gala for the more than 25 years he has spent working to protect children.

National Center for Missing & Exploited Children: Operation Kids Raises $500,000 for NCMEC

“We are honored to be recognized by Operation Kids,” said Ernie Allen, president and CEO of NCMEC. “They understand that our children face a wide range of issues that can threaten their well being and by supporting organizations that work on the most critical of those issues they make it possible for thousands of children to lead healthier and safer lives.  We appreciate the confidence that Operation Kids has placed in us with this donation and the opportunity it provides for us to continue our work.”

XanGoSphere (The Official XanGo Blog): Great Times at the OpKids’ Gala

“As always, we’re proud to support Operation Kids and it was great to see a man like John Walsh receive the recognition he deserves.”

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