Tuesday, June 26, 2012

Meet Our New 2012 CHERUBS Parent Advisory Board!

In 2012, we are completely restructuring CHERUBS to go from a small "mom and pop" charity that offers mostly support services to families to a much, much larger, more professional non-profit organization that can fund larger projects, fund more research, raise more awareness and provide more services to families.
One of the steps we are taking to do this is we have restructured our Board into 3 Boards;  Executive Board of Directors, Medical Advisory Board and Parent Advisory Board. 

Meet Our New 2012 CHERUBS Parent Advisory Board!

The purpose of the Parent Advisory Board is to oversee all of our support services, help us to delegate responsibilities and fill volunteer positions, deal with member conflict, process new ideas, handle suggestions and complaints and be the professional "face" of CHERUBS in social media.

This position has a 1 year term beginning annually on June 1st.  The first CPAB was appointed for 2012.  The first election will be held on May 1, 2013.  Members can serve up to 5 terms in a row if elected.  Members can run for reelection, nominate themselves or others, and it is up to each member whether or not to accept a nomination.  Our goal with elections is to keep active members on this Board and give the membership more of a say so in the leadership of our charity.

All members of this Board will serve 1-5 years except for the Volunteer Coordinator, who will Co-Chair this Board for unlimited terms with a fellow 1-yr-term Co-Chair chosen annually by the Board of Directors.  The Co-Chairs are responsible for overseeing the duties of the Parent Advisory Board and Volunteers.  They will both report back to the Board of Directors quarterly.

The Board of Directors will be the business end of CHERUBS.  The Parent Advisory Board will be the heart and soul of our CHERUBS team. This is a very important Board with very important roles that these members do not take lightly. 

You can send your comments, questions, concerns and other correspondance to the new Parent Advisory Board at cpab@cherubs-cdh.org

Welcome to our new 2012 CHERUBS Parent Advisory Board:

Kara HessKara Hess, Parent Advisory Board Co-Chair

Kara is mom to Adam, LCDH survivor born August 2006.  Other complications from his CDH include Gastric Volvulus (rare abnormal rotation of the stomach of more than 180° that creates a closed loop obstruction), Dysphagia, Hypospadius, reherniation, bowel obstruction, and malrotation of the intestinal tract.  Adam also has Apraxia, a neurological disorder that is characterized by the loss of ability to carry out learned movements,despite having the desire and physical ability to perform the movements.  

Kara has been a member of CHERUBS since 2007 and has served on the CHERUBS Executive Board of Directors and Conference Planning Committee.  She is wife to Chuck and is a stay at home mother of two busy boys. Prior to motherhood, Kara worked as a Senior Contracts Specialist for a meeting and conference planning company.  She also worked as a Professional Development Assistant for a child care referral agency. Kara received her Associate of Applied Business degree from Stark State College.

She enjoys Thai and Indian dining/cooking, biking, traveling, garage saling, daily coffee time with her mom, and leading a daily women's Bible devotional group.   
Karen MyersTracy Meats, Volunteer Coordinator Co-Chair

Tracy is the mom of Ian Wesley, born April 3, 2004, at 36 weeks old.  He was born with an undiagnosed left-sided CDH.  He spent 53 days in the NICU at Primary Children's Medical Center in Salt Lake City, Utah.  Ian was on ECMO for 7 days and had his CDH repair on day 5.  On day 48, he had left and right inguinal hernia surgeries, along with an undescended left testicle surgery.   He was on a ventilator for 29 days, of which 23 days was an oscillating vent.  He endured many complications including pulmonary hypertension, NG tube feeds, developmental delays, minor oral aversions, hypoplastic left lung, chylothorax,  pneumothorax, anemia, acid reflux, and oxygen dependency.  Ian used oxygen for 546 days.  He currently has abnormal systemic venous drainage above the heart with numerous collateral vessels and an echogenic mass on the heart, all due to ECMO.  Ian loves school and his video games!
Tracy is the Wyoming State Representative and Volunteer Coordinator for CHERUBS.  She is married to her loving husband, Chris, and they have 3 other sons besides Ian; Cole, Shane and Toby.  She is an Avon Representative and her full-time job is a stay-at-home mom.  Tracy has a BS in Accounting and has worked as an auditor and tax consultant.  She enjoys volunteering to help CDH families, reading, playing and listening to music, anything crafty, and fishing.

Neil RubensteinNeil Rubenstein, Back-Up Co-Chair

Neil Rubenstein has been married since 2003 to his wife, Amy. His CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks.  Aidan had surgery to repair his hernia when he was 4 days old.  His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon).  Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days.  Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen

While Amy and Neil were still dating, they started Creative Celebrations, a children party planning and entertainment company.  Neil has over 15 years experience in Integrated Marketing Communications.
Nicolle ColvinNicolle Colvin

Nicolle is the mom of Kasey Colvin 11.16.08-12.19.08. Kasey was born with undiagnosed left sided diaphragmatic hernia. Kasey fought for 33 days, he had severe chylothorax and his lymphatic system wasn’t functioning properly, so he grew his wings on December 19th.

Nicolle is the Colorado State Representative for CHERUBS. She is married to her husband Kevin, they are also the proud parents of 2 year old Brooklyn. Nicolle enjoys working out and going to Bronco and Rockies games with her family.
Freedom GreenFreedom Green

Freedom Green is the mom to Kylee Freedom Green.  Kylee was born October 4, 2000 and passed away on October 5. She was with us for 14 hours.

We first learned about our daughters condition at our 18-week ultrasound.  She had Left-Sided Congenital Diaphragmatic Hernia
also known as CDH.   Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Lukes Episcopal Hospital in Houston, TX.  Dr. Brian Kirshon of Houston Perinatal Associates performed an emergency cesarean due to massive polyhydramnios that was restricting Kylees growth. As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Childrens Hospital. She passed away peacefully in our arms. 

I currently live in Owings Mills, MD with my family. I am married to the most loving and caring man; my husband Joseph Green. We have 4 wonderfully active children here with us today: Trey ( 9 ), Skyla ( 8 ), Chloe ( 6 ) and Elodie (3). I work full time as a stay at home mom.  I love long-distance running, reading, playing, traveling, cooking, and gardening; all with my family. I have been a member of CHERUBS since 2000.  I serve as a CHERUBS "on call" parent for grieving families.  I also work as part of the welcoming committee, and any other odd jobs which help CHERUBS.  I love helping CHERUBS.  It is amazing how much CHERUBS has grown over the years.  CHERUBS is by far the most comforting place we found on our journey down the CDH path. It makes me smile.
Karla HoltKarla Holt

Karla is the mom of Braden Holt, born March 13, 2008. Shortly after birth he was diagnosed with a right side congenital diaphragmatic hernia. He was transported via helicopter to the Children's Hospital of Philadelphia. Braden's condition remained stable and he was able to have his diaphragm repair surgery the day after his birth. He recovered quickly and was able to come home on his 12th day of life! To date, Braden has had two other minor procedures. At 13 months he required surgery for an undescended testicle (orchiopexy) and had ear tubes placed in
both ears in July 2010. Thanks to a year of in home feeding therapy Braden is now eating us out of house and home! He is a happy and energetic four-year-old who spends his days practicing his ninja moves (karate) and terrorizing his big sister, Brooke (age 8).

Karla lives with her family in Bucks County, Pennsylvania (Fountainville) and is the CHERUBS state representative for Pennsylvania, New Jersey, and Delaware. She teaches high school Spanish in the Abington School District and has studied in Seville, Spain. She also has a Master's degree in ESL. She loves running, swimming, and being outdoors with her family.
Melissa LarrisonMelissa Larrison

My name is Melissa Larrison. I am a mom to 3 beautiful children. Jada who is nine, Kaia who is eight, and Hanna Rae Rose who is our CDH angel. I was diagnosed at nineteen weeks and went to OKC to deliver as it was close to family. Hanna’s defect was relatively small and easy to fix. Unfortunately her little body couldn’t get over other complications with her care and she passed away after twenty one days of fighting.

I joined Cherubs in October of 2008 and the amount of support I have received is immeasurable. Cherubs has become part of my family and I am forever grateful for them. I now hold a board position on the parent board. I am the Fundraising Coordinator and the Virginia state representative. Please feel free to contact me for any of your Cherubs needs.
Karen MyersKaren Myers

Karen Myers, is the mother to Kaleigh Marie who was born on 30 July 2002. She was born at Wilford Hall Medical Center, in San Antonio TX, after learning at 20 weeks gestation she would be born with a left sided Congenital Diaphragmatic Hernia. She spent 10 days on ECMO and had her CDH repair on her 15th day of life. During her repair her spleen cracked and that had to be repaired as well. Unfortunatley she passed away when she was 17 days old, the pulmonary hypertension proved to be to much for her. I am also the mother to another angel, William Logan, who was stillborn on 27 May 2005, at 27 weeks gestation, due to non-immune hydrops fetalis. After much testing and genetics couseling it was deemed that there was no connection between the CDH and Hydrops we just got struck by 2 different lighting bolts. They are buried sde by side at the National Cemetary in Biloxi Mississippi where my husband and I will be layed to rest with them one day.

I am also the mother to 3 other beautiful children. Alec, who will be 18 soon and off to college. Aubrey, who is 6 and loving the 1st grade and Jackson, who is 18 months and into everything. I also have a wonderful husband, Will, who is active duty Air Force and I am a stay at home mom. We currently reside in San Antonio Tx but move when the Military says so. I have been a member of CHERUBS since finding out about Kaleighs CDH and wouldn't be the somewhat sane person I am today with out all of the volunteers love and support over the years as well as all the wonderful parents I have met along the way who journey through this horrible defect together.
Christina Smith-StemblerChristina Smith-Stembler

My name is Christina, I am Mother to 4 children. My 3rd child, Hunter was diagnosed with Left side CDH at 20 weeks gestation. Before the diagnosis, I was full of joy that I was having my first Son, after, I was full of worry. Hunter was born in 2008, full term with less than 10% chance of survival, and survived LCDH(Left Sided Congenital Diaphragmatic Hernia), 10 days on ECMO, Initial replacement of missing diaphragm with synthetic NeoPrene patch, Breathing Machines, pulmonary hypertension, Stroke, No Pericardial Sack, RSV, Repair to diaphragm Patch, Bowel Blockage, Bowel Reconstruction, Months of IV antibiotics, Lovenox Shots to dissolve blood clot in heart, Low Weight and Size, Still being fed by G-Tube, (WEEK OF APRIL 13TH, 2012 HUNTER TOOK HIS FIRST FOOD BY MOUTH) Physical, Occupational and Feeding Therapy Daily and through all of this, he looks at me and brightens every room with his smile, he has remained happy and strong, he has even taught me the meaning of the words miracle, strength and humility. Hunter is my hero and stronger in spirit than anyone I have ever known! He is now 4 years old and attends a preschool with other special needs children. He has come so far and I am so proud to be his Mother. Overall, Hunter spent 45 days in NICU, several other hospital stays and approximately 10 surgeries. He has 2 Big Sisters, Danielle 21 (Dating a CDH Survivor), Codee 17, and a baby Brother, Hayden 2. Hunter's condition, in a weird way, has made us stronger as a family (The Stembler Six Pack) and has taught us lessons we will never forget! He is the reason I became Washington State Rep and Oregon Co-Rep for CHERUBS. I wanted other families to know that there is someone here for them, someone that they can depend on and a little boy that can provide some light in the darkness of CDH.
Chris WeaverChris Weaver

I am a mother of 4, 1 angel born sleeping, 2 girls and one boy.  I am also a grandmother of 3, 2 grandsons and 1 granddaughter. Born and raised in Boston suburb and moved to West Michigan in 2007.  I have two grandchildren with rare diagnosis of genetic disorders.  Matteo who is 3 1/2 was diagnosed at birth with hirschsprungs disease, which affects the colon.  He had a repair surgery at 3 weeks old.  Nevaeh, my granddaughter, who is the reason I became a member of CHERUBS in 2009, was diagnosed at 17 weeks gestation with LCDH.  I count my blessings each day as I have been told that it is very rare to have 2 different genetic diseases in the same family as we have.  We are lucky that both children have had corrective surgery and at this time doing well.