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 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.
|
 Tracy 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 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
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| 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 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 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. Luke’s Episcopal Hospital in Houston, TX. Dr. Brian Kirshon of Houston Perinatal Associates
performed an emergency cesarean due to massive polyhydramnios that was
restricting Kylee’s growth. As soon as they delivered
her she was immediately transferred to the NICU/Neo-Natal team right at the
adjoining Texas Children’s 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 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 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 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-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 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. |
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