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Join Us at Our New Blog Site

If you have been reading A Voice for Children via e-mail, you may have wondered why you haven’t received one lately. We switched to a new platform in mid-December. You can visit the new blog here: http://blog.operationkids.org. If you want to continue receiving posts via e-mail, please click this link to sign up.

-Sara

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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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The Littlest of These

Last April, after attending a business function downtown, I was stopped by a woman as I approached my car. She was tousled and a bit unkempt, though clean. Strapped to her chest was an infant.

April weather here is incredibly unpredictable and on that day there were snow fluries in the air. She looked cold and desperate as she explained her situation. she asked for a few dollars to help her find shelter and food for her and her baby that night while she waited for her name to rise to the top of an affordable housing waiting list. Her baby slept peacefully on – unaware of his circumstances.

I ached to give her more than I had – a few dollars and a clean fleece blanket from my car’s emergency kit – yet she received them as if I had given her far more. Tears misted both of our eyes. I returned home that day deeply changed.

That incident has stayed with me the last seven months, especially since I gave birth to my second child in August. As the weather begins to turn cold again, I find my thoughts frequently turning to that young woman – so desperate to provide for her baby that a few dollar bills and a blanket were received as if they were life’s grandest treasures. I have since learned that with the economic turmoil of the last year, shelters, food banks and other providers of basic necessities are in dire need of supplies for infants and young children – formula, diapers, wipes, blankets and the like. As a group, babies are among the most overlooked by those donating items to emergency shelters and clinics – and yet they are among the most vulnerable, especially during the harsh winter months.

As a result of last spring’s experience,  my husband and I have decided this holiday season to provide some much-needed necessities to the local March of Dime’s Teddy Bear Den – a community based prenatal health program for low-income pregnant women – in lieu of gifts to family members. I cannot fathom the hollow ache that must fill one’s soul when the necessities are beyond one’s grasp.  I don’t want to have to meet another mother and her baby on a snowy afternoon with nothing to eat and nowhere to go.

As I put my children down to bed tonight – in a warm home, with their bellies full – I am thinking again of the woman and the baby who are wrapped up somewhere in my purple fleece blanket. This year, my Thanksgiving holiday is dedicated to them and others like them – may this winter bring better fortunes, a warm place to sleep and enough food to not have to put your little one to bed hungry.

If you have a warm place to sleep and enough food to satiate your hunger during this season of giving, count your blessings and join me in sharing what extra you might have with the littlest of those among us.

-Sara Brueck Nichols

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What You Give Away

This past Friday I had the pleasure of attending an event where Amy Grant and Vince Gill received the Jack C. Massey Leadership Award for their substantial efforts in assisting the work of the Mental Health Association of Middle Tennessee.

The evening was as emotional a gathering as I think I have ever attended. The reason being, as is often the case when people give so deeply, there was a personal connection for Amy and Vince that was beautifully conveyed.

Each of them have had experiences with mental illness in their family circles that they were generous enough to share. And they are not the only ones. According to the National Institutes of Health, An estimated 26.2 percent of Americans ages 18 and older — about one in four adults — suffer from a diagnosable mental disorder in a given year. The holidays can be the toughest time of year for families who struggle with mental health issues, and it seems appropriate to comment.

I have always thought that songwriters must experience some outlet or release in expressing themselves in lyric and song. I can see that when it comes to Amy and Vince, this is indeed the case.  Each sang a couple of songs that were even more meaningful when the “back story” was revealed. One example (or maybe two):

Vince sang a beautiful song entitled “Bread and Water” chronicling the last hours of a homeless man. Vince said the song was inspired by his brother, who followed a downward trajectory after a near fatal car wreck and months in a coma, but according to Vince, “possessed more character than anyone he has ever known.”

He then revealed a great deal about himself with a song entitled “What You Give Away.” I must tell you this song takes on an entirely different emotional level when delivered in that beautiful tenor voice, but the lyrics are worth a visit regardless of your religious affiliations or lack thereof:

You read the business page
See how you did today
You live up on the hill
You’ve got a view that kills
Never wonder why

After you’ve counted everything you saved
Do you ever hit your knees and pray?
You know there’s gonna be a judgment day
So what will you say?

[Chorus:]
No matter what you make
All that you can take
Is what you give away
What you give away

There’s people on the street
Ain’t got enough to eat
You just shake your head
The measure of a man is one who lends a hand
That’s what my father said

No matter what you make
All that you can take
Is what you give away

A timely message as we approach the season of giving. As you rush about preparing for seasonal observances, be aware of those around who may be struggling. If you sense someone may need help, be the one to help. There are resources all around. You may want to check the website of your state or local mental health department, or here are a couple of suggested sources for you or a loved one, neighbor or co-worker, you can get information at:

The Mayo Clinic

National Mental Health Association

For highlights of the evening I would encourage you to visit TheLostLyrics.com and share in the stories.

-Rick B. Larsen

 

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I give to charity, but I am not a philanthropist….or am I?

Several Thanksgivings ago, my wife and I found ourselves at Arlington National Cemetery.  As we stood conversing near Robert E. Lee’s old mansion, admiring the view of the Potomac below, we were approached by a woman.  She wished us a happy holiday and then went on to tell how she had traveled to DC the day before so that she could attend the funeral of a son who had been killed in action in Iraq and buried at Arlington.  I was surprised by the sudden appearance of the woman and by the recounting of her grief.  Not quite sure what to say, I expressed some generic statement of sympathy and we quietly parted ways.

Fast forward a few years and I find myself this Thanksgiving eagerly waiting for the return of a family member who is serving in Afghanistan. It has been an incredible year for our family as we have watched this young man transition to military life and depart on his first tour of duty. While his time with us on leave will be short, our Thanksgiving together this year will be particularly meaningful. But with his homecoming, I am reminded of that experience at Arlington. Looking back, there was definitely more that could and should have been said. I am not one to live in the past; I simply wish that I had understood the woman’s loss with the same clarity that I do now. If I had, I would have done more to share my sincerest gratitude for her son’s service and my heart-felt grief at his sacrifice.

It is amazing how age and life experience can deepen our understanding of the value of people and blessings in our lives. And it has been my experience that with that self-reflective discernment comes an enhanced capacity to take action.  There is certainly reason enough this year for us to be particularly grateful for blessings that we might have taken, more or less, for granted in years past.  You don’t have to look far to find many that have lost jobs, lost homes and lost hope. Unfortunately, at the same time, the nonprofit sector finds itself in an interesting predicament.  While the needs of many have grown, corporations and foundations have had to cut back their funding to accommodate their own financial losses.

This year, more than ever, we need philanthropists – individuals who value clarity, effectiveness, and significance in their giving.  And philanthropy is not something reserved for only those of high net worth.  It is the distinction granted to individuals who are grateful for their material capacities, who personally identify with the needs of people and causes that parallel their own experience, and who wholeheartedly pursue their self-perceived charitable duty. So this year, as charitable opportunities abound, take a moment to reflect on what inspires your giving and volunteering. In doing so, not only will you have a much more rewarding experience, but you will also ameliorate the circumstances of those around you.

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Nickle and Dimed: A Review

I would like to recommend an eye-opening book that is important for anyone to read, but is an especially important read for those who are concerned about changing the world for the better. The book is called Nickel and Dimed by Barbara Ehrenreich.

I am not announcing this as the latest “must read.” In fact it has been around for a while, but it just came to my attention. Here is the backstory.

 Barbara is a writer. The genesis of this book took place over lunch with her editor at Harper’s. Their conversation “drifted” to the question, “How does anyone live on wages available to the unskilled?” In particular, they discussed the difficulties of the roughly four million women who were forced back into the labor market by welfare reform. Whatever your political stand on welfare (and that stand is NOT the point of this blog), this mass migration from public support to $6-7.00 an hour wages, had immediate, practical consequences.

The discussion progressed to the point where Barbara was asked, or told rather, to write about the experience by living it. She was take on the role of a single woman with no support system, in cities she did not know, and live on whatever wage she could secure. The experiment took her to waitressing at a restaurant, cleaning hotel rooms, home cleaning for a national service chain and a shelf-stocker for a major retail chain.

These stories are interesting on the surface, and had I read this book 10 years ago, I would have enjoyed it on merits and likely dismissed it. However, reading it now, with a decade of experience in the public sector, I realize how our misunderstandings of one another continue to sabotage our efforts to improve the lives of others. We still, all too often, do not know how to help because we do not understand the lives and circumstances of those we would choose to help.  

For instance, we view poverty as a choice that was somehow made by each and every person who lives it. While I am well aware of the qualifiers on this subject, and that issues of self-motivation and work ethic often come into play, this book will open your eyes as to how nearly impossible it is for a person living on minimum wage, with no other support, to get out of the cycle.

The author was, and is, a hard-working, intelligent woman who, stripped of her credentials and background, learned how exhausting and hopeless the plight of millions of the “working poor” really is. Her journey brought to light everything from transportation issues to housing, health care, minimum wage and drug testing; not from a public policy standpoint, but rather from a victimization standpoint – a standpoint of what it is like to live in a cycle of working to simply exist.

It is worth a read and it will have an impact on how you view those around you, and perhaps on the manner in which you choose to help others in the future. It will certainly change your view next time you are in a coffee shop, checking out of a hotel room and passing the maid in the hall, or shopping at the world’s largest retailer.

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The dawn of philanthropic giving in China

On May 12, 2008 a major earthquake measuring 7.8 on the Richter scale devastated Sichuan province in China, killing approximately 87,000 people and displacing millions. Within hours of the earthquake, hundreds of non-government organizations had organized to solicit donations and volunteers to aid earthquake victims. China’s most popular internet portal sites, including Tianya, Tencent, Sohu, Taobao, and KongzhongNet partnered with several charitable foundations to launch a massive online fundraising drive for earthquake victims, raising over 24 million RMB (US $3.5 million) within three days, mostly from individual online donations.  Within two weeks of the earthquake the total amount of social donations as reported by the Ministry of Civil Affairs had reached 30.876 billion RMB (US$4.5 billion).  (see Yang Guobin’s article at http://yaleglobal.yale.edu/content/civil-society-emerges-earthquake-rubble and Jia Xijin’s article at URL:http://www.nautilus.org/fora/security/08056Jia.html)

Does the explosion of charitable giving that followed this earthquake represent a one-time spike in philanthropic activity in China triggered by a particularly tragic disaster? Or is it indicative of a more long term trend in China towards the development of a healthy philanthropic sector? While it there continues to be many obstacles to the development of such a sector in China, there is significant evidence to suggest that there is growing demand and space for philanthropic activity in Chinese society.

China has traditionally seen relatively little philanthropic giving outside of the family. Various observers have offered numerous explanations for why this is so. Some point to cultural barriers, noting that both Confucianism and Chinese Marxism promote a culture in which social and political issues are viewed as being primarily the domain of the elite. Others note that in spite of the enormous economic gains made by China since the beginning of reforms in 1978, a relatively large portion of the Chinese population continues lack the resources to participate significantly in philanthropic giving.  Another important factor impeding the development of a philanthropic sphere in China has been the dominant position of the government in Chinese society, particularly during the Mao period.

Recent events, including the Sichuan earthquake and the 2008 Beijing Olympics, suggest that these barriers are breaking down fast. Social donations skyrocketed in 2008, increasing 246 per cent since 2007, as did volunteerism with over ten million volunteers participating in earthquake relief efforts and millions more getting involved in the Beijing Olympics. Simon Elegant of Time views this describes this spike as a “shock of consciousness… a new confidence in the ability, even duty, of ordinary Chinese to contribute to building a more virtuous society and a willingness to press the government for the right to do so” (see his article at http://www.time.com/time/magazine/article/0,9171,1808638,00.html). This development has had a profound impact on both domestic and international corporations, who have had to ramp up there social responsibility programs to avoid be labeled as misanthropic “iron roosters,” as well as on grass roots non-government organizations, who have benefited greatly from the increase available funds and volunteers.

The event of 2008 revealed that a large number of people in China have both the desire and the resources to participate in philanthropic activities. Furthermore, philanthropic organizations in China are becoming increasingly organized and professional. Countless non-governmental organizations dedicated to dealing with social and humanitarian issues are operating in China with progressively higher degrees of autonomy from the government.  Most importantly, the Chinese government is allowing more space for philanthropic work in China. This is partially a consequence of the increasing difficulty of managing an ever more diverse and complex of Chinese society, but also reflects acknowledgment on the part of the Chinese Communist Party of the immense contribution a healthy philanthropic sector can make to a society.

While the level of donation and volunteerism has inevitable receded in the year since the earthquake, there is significant evidence to suggest that there is enormous potential for the philanthropic sector to grow rapidly in the coming years. In short, international charities, religious organizations and special interest groups which focus on disaster relief, charity, and providing social services without crossing political boundaries are likely to find an increasingly open and friendly reception by the Chinese government and people.

Britton

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