Congenital Diaphragmatic Hernia: September 2010

Wednesday, September 29, 2010

2011 CDH Cherubs Calendars - We Need Your Photos!

We are doing 2 calendars for 2011! :)

Calendar #1 will be like our calendar last year but of course different graphics. We work HARD to make sure anything that we sell looks professional as don't want anything cheesy to represent these cdbabies and families! We think our volunteers do a pretty darn good job with graphics! :) Check out last year's calendar below. You can still order it at http://www.cafepress.com/cherubs.415954058 Please send your cherubs' photos (survivors and non-survivors) to membership@cdhsupport.org and make to include their name and date(s)! Photos must be submitted by November 15th.

Calendar #2 will be 13 "Save the Cherubs" photos. This calendar will be sold not only to members but the public as well. But to make this one we need 13 month appropriate photos! So those of you with wings (or go order some at http://www.savethecherubs.org).... we need a good pumpkin patch photo, Christmas, football, Easter, St. Patrick's Day, etc. Make sure they don't look posed! ;) All photos submitted will also go to our "Save the Cherubs" campaign - and all those posters, graphics will be ready by November too. Photos must be submitted by November 15th.

Cover
See, it pays to send us photos of your kids dressed like cherubs! Wink

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Thursday, September 23, 2010

Prayers & Quotes for September 23, 2010

Prayers & Quotes for September 23, 2010

If you have a prayer request for a cherub or a family member of a cherub, you can send it to prayers@cdhsupport.org.

Please keep the following in your thoughts and prayers:

Newborn cherub Elijah V., arrived 7/8. He has had his CDH repair, successfully came off of ECMO and is off his nasal cannulas. He is working on feeds.

Newborn cherub Finley D. arrived 8/12!! Please pray she continues making progress with her feeds, for that is what is holding her up from going home!

Newborn cherub Mattiaus D., arrived 8/24 and has had his repair surgery. He is off the vent and now is on CPAP. Please pray for his continued healing.

Newborn cherub Dante M. arrived 8/28, a little over a month early, along with his twin sister. Dante is having surgery today and has proven to be a fiesty little boy! His twin sister after 3 weeks in the NICU was released to go home. Please keep Dante and his family in your thoughts and prayers.

Newborn cherub Savannah Q., arrived 8/30. She had her surgery on day 1 and spent 11 days on ECMO. She has been extubated and appears to be a fighter!

Newborn cherub Airynn E., arrived 8/31. She has had her surgery repair and is on the road to recovering. Please pray for strength for Airynn and her family.

Newborn cherub Megan H. arrived 9/1. She is struggling with pulmonary hypertension and has not had her repair surgery. Please pray for strength for Megan and her family.

Newborn cherub Heath F., arrived 9/8! He has had his CDH repair and is breathing room air! Please pray for his recovery and his feeds go very well.

Newborn cherub Kendall F. arrived 9/14, please pray for strength for her and her family for she is being transported to another hospital this afternoon. CDH surgery scheduled for tomorrow. After CDH surgery tomorrow, they will perform heart surgery Monday. Her family asks that everyone will pray that the transport from one hospital to another will go well for her, and tomorrow's surgery will allow her a chance at life.

Newborn cherub Whitney M., arrived 7/21 and was welcomed home on 9/15!! Welcome home Whitney!

Newborn Quinn T. was born 6/22 and was welcomed home on 9/3!! Welcome home Quinn!

Newborn cherub James B. is so close to going home! Please keep this amazing boy in your thoughts and prayers and hope he gets to go home soon, tentatively set for 10/27!!

Newborn cherub Micah P. is still in the NICU and will turn 1 on 9/30. Pray for continued strength for Micah and that he may get to go home soon.

Teenager Cherub Logan W. had his pectus repair surgery on 9/9. Please pray for his pain to subside and for his recovery. He was released from the hospital 9/15 and has a long recovery ahead of him.

Cherub Sofia C. had her gallbladder removed last week, please pray for her recovery.

Cherub Alannah has reherniated and her surgery is today! Please pray for her recovery.

To all our families and friends that are fighting against the flu, colds, sickness…may you feel better soon and have no complications.

Cherubs on Their Way:

Cherub Aurie B., due 9/17 - have no updates to give
Cherub "baby boy" G., due 10/11
Cherub Isaac I., due 10/14
Cherub Axel C., due 10/27
Cherub Abel B., due 10/28
Cherub Boone P., due 11/2
Cherub Zoe C., due 12/1
Cherub Hollis Y., due 12/2
Cherub Flynn L., due 12/10
Cherub Wyatt M., due 12/19
Cherub baby girl G., due 1/15
Cherub Shiloh G., due 1/19

All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.

Newly Grieving Families:

Please keep the family of newborn cherub Addison R. in your prayers for comfort and strength. Addison was born Sept. 12, 3lbs. 15 oz. and 16 inches long with Trisomy 18 and CDH. She grew her wings on 9/12. Please keep her parents Angie and Ryan and siblings Colby and Karlee in your thoughts and prayers during this difficult time.

Please keep the family of newborn cherub Skylar M. in your prayers for strength and comfort. Skylar lost her battle with CDH on 9/22.

Please keep the family of newborn cherub Savannah F. in your prayers for comfort and strength. Savannah was born on 8/23 and grew her wings on 8/31.

Requests prayers for the family of newborn cherub John, who lost his battle with CDH on Saturday, 9/17.

Please pray for newborn cherub Hari's family, who grew his wings this month.

Please pray for newborn cherub Alex's family, who grew his wings this month.

Please pray for newborn cherub Emily's family, who grew her wings in the early morning of 9/18.

To all families affected by CDH and the loss of your precious child, may you find peace and comfort and know you are never alone, for so many people care about you.

Today’s Quotes:

‎"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." ~Author Unknown

"Occasionally in life there are those moments of unutterable fulfillment which cannot be completely explained by those symbols called words. Their meanings can only be articulated by the inaudible language of the heart." ~Martin Luther King, Jr.

"The capacity for hope is the most significant fact of life. It provides human beings with a sense of destination and the energy to get started." ~Norman Cousins

"Hope is faith holding out its hand in the dark." ~George Iles

Monday, September 20, 2010

CHERUBS in the Durham Herald-Sun

http://www.heraldsun.com/view/full_story/9590190/article-CHERUBS-nonprofit-receives--30K

CHERUBS nonprofit receives $30K

Submitted story

Recently in Durham, CHERUBS, an international children's charity headquartered in Wake Forest, received $30,000 as part of the APX Gives Back Project. This cash presentation is part of the nationwide APX Alarm Gives Back Project where more than 375 nonprofit organizations competed over the past few months through voting on Facebook. CHERUBS won first place regionally and second place nationally.

CHERUBS serves families of babies affected by Congenital Diaphragmatic Hernia (CDH). CDH is a birth defect that occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. More than 600,000 babies have been born with CDH worldwide since 2000. Fifty percent of babies born with CDH do not survive. The cause is not known.

Both Duke and UNC are highly-rated care centers for babies born with Congenital Diaphragmatic Hernia and we value our ties to both of these institutions and to our community here in the Triangle. CHERUBS was dreamed up in the Pediatric Intensive Care Unit at Duke when the founders met while their sons were patients in 1993. It was founded two years later in 1995 with the support and encouragement of a pediatric surgeon at UNC Chapel Hill. CHERUBS is the world's first and largest organization for CDH, helping families in 38 countries. Our charity offers dozens of free services for families, promotes CDH awareness through our national Save the Cherubs campaign, and we are currently working with three congressional sponsors for $50 million in National Institutes of Health funding for CDH research. This prize from APX doubled its annual budget.

CHERUBS in the Salt Lake Tribute

http://www.sltrib.com/sltrib/money/50300284-79/apx-employees-votes-alarm.html.csp

APX Alarm employees donate $250,000

The Salt Lake Tribune

Published Sep 16, 2010 03:40PM
Updated Sep 17, 2010 05:23PM

Employees of Provo-based APX Alarm Security Solutions Inc. have donated $100,000 to a Utah group that provides support for families and professionals dealing with a genetic disorder called Prader-Willi Syndrome.

The award, based on votes on Facebook, went to Utah Prader-Willi Syndrome Association. The syndrome causes life-threatening symptoms that include weak muscles, slow metabolism, growth problems, cognitive and behavior problems, and an insatiable appetite that can lead to morbid obesity.

Employees of APX, which bills itself as the sixth-largest residential security company in North America, contributed the monies and donated over 7,500 hours of work to charitable causes.

Winning $30,000 awards, also based on Facebook votes, were the Prader-Willi California Foundation; the Heart 2 Home Foundation of Utah; Tapestries of Life in Texas; the Association of Congenital Diaphragmatic Hernia Research, Awareness and Support of North Carolina; and the Alberta Association for Community Living of Canada.

There were 263 nonprofits nominated through the U.S. and Canada and more than 360,000 votes cast during the competition that began in May, the company said.

Wednesday, September 15, 2010

CHERUBS & APX Press Conference

photo by Michael Cunningham of APX Alarm

On Monday, September 13th, CHERUBS and APX Alarm held a press conference. CHERUBS was presented with a $30,000 check by APX Gives Back. Dawn's speech and these photos say it all...

photo by Michael Cunningham of APX Alarm

11 years ago today I was saying good-bye to my son at a funeral home. Instead of picking out colleges, I got to choose his headstone. Instead of dressing him up for the prom, I got to choose the clothes he was buried in. That is something that no parent should ever have to do. I will never see him grow up, fall in love, get married, have a career or become a dad. That is something no child should be robbed of. But Congenital Diaphragmatic Hernia did that. It took his life and it takes the lives of over 30,000 babies every year.

Congenital Diaphragmatic Hernia (CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive, the other 50% that do make it often endure long hospitalizations and many major surgeries.

Congenital Diaphragmatic Hernia is not a rare birth defect. It is as common as Spina Bifida and Cystic Fibrosis. Annually in the United States, more people are victims to CDH than lightening strikes, tornados, hurricanes, earthquakes and floods combined. Every 10 minutes a baby is born with CDH, every 20 minutes a family is devastated as they say good-bye to their cherubs. In the past 10 years, over 600,000 babies have been born worldwide with CDH. It has taken the lives of over a quarter million babies since 2000. Yet there is little research and even less awareness.

CHERUBS was founded in 1995, right here in the Triangle. We've spent the past 15 years trying to raise awareness of Congenital Diaphragmatic Hernia. We have screamed, begged and pleaded with the world to pay attention to these babies. We've built sites, blogs, we've invested years in sharing our stories and photos of our children. Without awareness, there are no research funds. It's heartbreaking for us families to watch these babies die and struggle to survive and to feel like the world doesn't care about these children. Raising CDH Awareness has been a large, hard uphill climb for us.

Until APX Gives Back. APX gave us a platform to raise awareness on a level we've never been able to before. We reached 1000's through Facebook, flyers, e-mails and APX's blog and Facebook pages. Our members, CDH families, did such an incredible job raising votes and awareness. We collected over 25,000 votes. We begged, pleaded, drove our family and friends nuts to vote but along the way, a funny thing happened.... people became aware of Congenital Diaphragmatic Hernia. Strangers from other charities became friends and learned about CDH and voted for us. Strangers on the street saw a flyer and voted for us. 1000's of people who had never heard of Congenital Diaphragmatic Hernia learned about the contest and voted for us. We have met so many amazing people and our childrens' stories touched their hearts and they learned about CDH.

APX did this. Through their generousity in the APX Gives Back program, they helped us to not only raise awareness but gave us the opportunity to win $30,000. 2 amazing, amazing gifts. CHERUBS is run strictly by volunteers. We have no office. No grant funding. No sponsors. We provide services to over 3200 families in 38 countries on a shoestring budget made up of donations, lots of sweat and tears and prayer. Our annual donations average $30,000. APX has DOUBLED our annual budget for this year.

This means that we can now afford to get our research database up because we can hire a programmer to do the work I don't know how to do. We can get a toll-free number so families can call us without incuring a phone bill. We can send out newsletters again, update our member forums and supply more care packages to new and expectant families to give them hope at a time of a devastating diagnosis. APX Gives Back made that all come true.

How do we thank APX for all of this? There are no words. But there is gratitude now where there was worry on how we would fund services. There is pride on the faces of every CHERUBS family in what we worked so hard for all summer and accomplished. And there is hope for the services and projects we can now offer them. I know words do not suffice but on behalf of the 1000's of families that you have touched, thank you.

Thank you so much to the amazing people at APX Alarm; to the employees who donated money to make this contest possible, to Anne Marie who feels like part of our CHERUBS family now, to Tom who was our guardian angel and go to guy during the contest, to Josh for doing such a great job leading such a great group of people and to Todd, for starting it all. May God bless you all as much as you have blessed our cherubs and our charity.

And thank you to all of our amazing, amazing members who worked so hard all summer long to make this dream come true!!!!! We have made our children proud! :)

Tuesday, September 14, 2010

APX Contest Within A Contest Winners!!!!!!

First, thank you to all of you who voted and participated!!!!! What an amazing response we had and what awareness we raised!!!

Second, thank you APX Alarm for the opportunity to do all this!!!

And the winners are....

Grand Prize for $1000.00 - Lucas Tomczyk

1. Whoever has the most "attendees" on their Vote for CHERUBS in the APX contest FB event. Melissa Beamon

2. Whoever has the most active wall on their event by getting people to vote and then post that they voted. Carol Ann Berchtold Santo

3. Whoever is the most creative off of Facebook to raise votes! Handing out flyers, have a "vote in" at work or school, talk to your church, etc. (take photos!) Julie Younce

There is still a chance to win more great prizes, including a trip to the Masquerading Angels Ball and a Flip Camera!

http://cdhsupport.blogspot.com/2010/09/win-some-cdh-awareness-gear.html

Special thank-you's to: