Tag Archives: hope

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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Understanding Dissing

Note: Today’s post is written by guest author John A. (Jack) Calhoun, who directs the Network for the National League of Cities Institute for Youth, Education and Families.

 It had been a long day, beginning with a crack of dawn speech to the Salinas/Monterey Community Alliance for Safety and Peace followed by day-long meetings with the mayor and chief, local academics and a two-hour training I led for Court Appointed Special Advocates volunteers.

I was in Salinas for a site visit.  Salinas participates in the California Cities Gang Prevention Network, a 13 city initiative designed and run by the National League of Cities and the National Council on Crime and Delinquency.  In addition to Salinas, Network cities include Fresno, Los Angeles, Oakland, Oxnard, Richmond, Sacramento, San Bernardino, San Diego, San Francisco, San Jose, Santa Rosa and Stockton.

Toward the end of the day, two teenagers were shot in East Salinas.  One of them, 16-year old, Manuel Perez, a “B” student at Salinas High School, was gunned down while waiting for a ride to football practice. The other, 19-year old Santiago Ortiz, a known gang member, was shot and wounded.

The shootings affected me profoundly.  They shouldn’t have.   I’m a vet.  I was deeply moved, perhaps because I was tired after a cross-country trip coupled with a day packed with back-to-back meetings; perhaps because I know so many good, competent and caring people in this city, people from all key sectors of the Salinas community—police, schools, the faith community, the mayor’s office, social services and more—all  pledged  to stop violence and to build a Salinas that does not produce violence.  Perhaps because I witnessed first-hand the manifest hope and commitment early that morning, soon followed by the shootings and then by a collective sense of worry, of how daunting the task.

I needed a break before my evening dinner meeting. The cross-country flight, a day beginning at 7:00 a.m. and ending with training, had drained me. 

I took a brief bar break. Jacqui, who was cutting limes and plucking fresh mint leaves for my mojito, was, she told me, working at the bar to help support her fledgling music career.  Lydia from Western Siberia who served me appetizers, attended the local university in Monterey, where she was enrolled in the graduate linguists program.

The day before, a member of the hotel staff, Betsy, had given me a walk-though for our upcoming thirteen city conference, showing me the meeting rooms and other facilities.  A dietitian from Rochester New York, she, deciding to start over, packed up and moved to California.  She landed a job with the hotel, soon becoming its events planner.

It is future, a sense that you can take a street that leads out: Jacqui cutting limes to sing.  Lydia moving from table to table, gathering tips to pay for her university courses, her road having covered thousands of miles.  Betsy, freed from Rochester’s snows, coming across the country to settle in her sun-strewn home.

Each confident.  Each traveling well beyond the street where they began. Each striding confidently  into a new future.

Bryan Contreras who directs Salinas’ “2nd Chance Family and Youth Services,” a program for street kids told me later that night that most of the East Salinas kids rarely get out of their neighborhoods.  “Jack,” he said to me after the shootings, “Most of them have never been to the beach in Monterey.  And it’s only a few miles down the road.  Their ‘corner’ is where their world ends.  End it does—often too soon, tragically.”I thought this:  if Brian and I are walking in separate directions and we happen to bump into each other, we say a quick “Excuse me,” and move on.  Brian and I each have somewhere to go.

If I live in East Salinas and bump into someone on the way to my corner, it could be death for one of us, because, all-too-often, that is all there is, just the corner.  It is not an accidental bump.  It is “dissing”.  If all I have is the corner, I’ll defend it with my life.  Dissing is not the presence of something.  It is the absence of future. My corner.  My turf, which I will protect with my life.  Nothing beyond.

How desperately I want kids to know of long streets, streets that don’t kill, people that don’t u-turn at the end of the block, returning to spray bullets.

I want them to know stories of long streets, stories of people who have walked long streets, people who will walk with them down those streets, with them beyond the corner.

I want them to know they can be Jacqui, Lydia, Betsy, Brian.

-John A. (Jack) Calhoun

John Calhoun, who directs the Network for the National League of Cities Institute for Youth, Education and Families, was former CEO, the National Crime Prevention Council, and under President Carter, Commissioner, Administration for Children, Youth and Families.

Jack also serves on the Operation Kids Whole Child Committee. You can read more about Jack here.

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The OK List of America’s Best

As we congratulate Bill and Kathy Magee and Senator Orrin Hatch on their well-deserved recognition in November’s U.S. News & World Report, we are mindful of other great leaders with whom we have had the privilege of working during the past year. With that, I’d like to contribute an “Operation Kids: America’s Best Leaders in 2009” by highlighting additional leaders who have made an enormous impact in their communities and, due to their commitment and influence, the world.

Anthony Kennedy Shriver: In 1989 Anthony created a mentoring program on his college campus. That project turned into a life’s work. Today, through his stewardship and entrepreneurial spirit, Best Buddies® has grown into a leading nonprofit entity with increasingly international reach across six continents. It has established a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities. They positively impact more than 400,000 participants every year.  The organization is active in each of the 50 United States, and operates accredited international programs in 44 countries.

Drew Brees:   When Drew left the San Diego Chargers and signed with the New Orleans Saints in 2006, he and his wife Brittany took a higher view of the situation. They believed that they were directed to New Orleans for a reason, and committed to become part of the community. They immediately sought way to help rebuild post-Katrina. Today, Drew and Brittany have rebuilt nearly a dozen successful projects including athletic facilities, day care centers and critical education programs. Their adopted city of New Orleans have hailed them as true “Saints” in the city.

Steve Young: With an NFL Hall of Fame career behind him, Steve maintains a broadcast career, participates in a private equity firm, and continues to provide leadership of the Forever Young Foundation. Forever Young Foundation is a non-profit organization that serves children facing significant physical, emotional, and financial challenges. They focus on efforts to provide academic, athletic, and therapeutic opportunities to at-risk youth. They have expanded beyond their historical focus on Northern California, Arizona and Utah, to include development projects like the Forever Young Zones, Youth Education Town Centers (YET Centers) in each Super Bowl city and now, international initiatives including the building and expansion of schools in Ghana, Africa.

John A. (Jack) Calhoun: In his “retirement,” Jack manages the 13-California City Gang Prevention Network for the National League of Cities Institute for Youth, Education and Families. In 2007 and has published a book, Hope Matters: The Untold Story of How Faith Works in America. He has spent a lifetime attempting to improve the lot of children and families and the communities in which they live. President Carter appointed Jack to the nation’s top children’s job, Commissioner of the Administration for Children, Youth and Families, where he oversaw such programs as Head Start, Child Welfare, The Center to Prevent Child Abuse and Neglect, the Office of Domestic Violence and the Office for Families. For 20 years he served at the National Crime Prevention Council as its President and CEO. He also has served as Vice President of the Child Welfare League of America, was the Massachusetts Commissioner of the Department of Youth Services, and chair of both the Adolescent and the State of the Family Task Forces.

We give our deepest gratitude and respect to these great Americans who have truly made an enormous impact on their communities and the world around them.

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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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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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Beacon of Hope in New Orleans

 

When Rick Larsen and I started visiting New Orleans in early 2007 to identify charities for the “Operation Kids: Rebuilding Dreams in New Orleans” campaign, one of the first people we met was Denise Thornton.  Denise was the founder and president of what was, at the time, a brand-new and still small charity called Beacon of Hope Resource Center.  Denise and her husband Doug had founded “Beacon” after returning home following Hurricane Katrina.

 

You can imagine the challenges they faced as they tried to repair their flood-damaged home.  They had to coordinate the clean-up, turn back on utilities, purchase tools and materials, and hire contractors.  It was daunting.

For many of their neighbors, it seemed too daunting. Those residents postponed their return or gave up entirely because they didn’t see how the city could recover or how they could survive while the neighborhoods around them were so badly damaged.  So while most people waited, the neighborhood languished and the recovery stumbled along. 

Except for Denise and Doug Thornton and their friends and supporters.  They formed the first Beacon of Hope in their Lakewood neighborhood to provide information, support, and resources to residents wanting to return home.  They later added services in the form of advocacy, community programs and coordination of external volunteers in order to ensure that whole neighborhoods could recover and, eventually, they would help a city thrive.

The Beacon concept was an amazing success.  Today, the organization supports 12 resource centers (Beacons) servicing 22 neighborhoods devastated by Hurricane Katrina. Beacon serves an estimated 10,000 children living in 20,000 households in the Lake Area (Lakeview and Lakewood neighborhoods), Gentilly, Pontilly, and the Lower Ninth Ward in Orleans Parish. Those neighborhoods range from 79% recovered (Lakewood) to 19% (Lower Ninth Ward).  

And Beacon has even assisted communities outside of Louisiana that are trying to recover from their own natural disasters.  No wonder that it has been recognized locally, nationally and even by the United Nations for its community rebuilding efforts.

In 2008, Operation Kids and its partner, the Brees Dream Foundation, contributed $60,000 to Beacon to continue its important rebuilding efforts. Bacon will use the funding at several neighborhood centers, including on projects planned for the still-recovering Gentilly community.  In October, for example, Beacon hosted its largest volunteer project ever when nearly 2000 volunteers turned out to rejuvenate the Mirabeau Gardens neighborhood in Gentilly. They installed a new playground, planted 300 trees, cleaned and cut down 85 overgrown lots, and assisted 58 homeowners with rebuilding their properties.  

The Beacon of Hope Resource Center staff and volunteers continue to do tremendous work. We’re proud to support them in their efforts.

 -Steve

Steve Reiher, VP of Marketing & Development

 

 

 

 

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The Edible Schoolyard

Today’s blog post was written by Steve Reiher, VP of Marketing & Development for Operation Kids.

I recently had the opportunity to attend the open house for the Edible Schoolyard project at Green Charter School in New Orleans. Green Charter School is an open-access, public school serving more than 320 students in grades K-8. Most of Green’s students come from economically disadvantaged areas of New Orleans; in fact, about 95% qualify for the federal free or reduced-cost lunch program.

As part of our “Rebuilding Dreams in New Orleans” campaign, the goal of the Edible Schoolyard is to integrate organic gardening and fresh, seasonal cooking into the school’s curriculum and culture. Students participate in gardening and cooking lessons that reinforce classroom coursework in such core subjects as science, social studies, language and math.

The project revives and promotes the rich gardening and culinary heritages of New Orleans while providing hands-on growing and cooking experiences for public school students. Continue reading

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Filed under Initiative: Children's Issues, Initiative: Nonprofit Operations, Project updates, Whole Child