MEET OUR VOLUNTEERS - Marie Marchesseault

Marie Marchesseault Marie Marchesseault is the mother of Anna, who was diagnosed with right-sided CDH in-utero after an ultrasound was done and more tests were performed, just to make sure everything was okay.  After the diagnosis, Marie and her husband Bob were given the option to terminate the pregnancy by the hospital, but they chose not to, due to their personal faith.  Anna was born by a scheduled c-section on November 29, 2001 and had a successful diaphragm repair at 5 days.  She went on ECMO for 4 weeks and was in the NICU for a total of two months until she was discharged.  Anna was an unusually happy baby in the NICU due to the family support and wonderful care of the MGH staff.  Although she did not have any other major complications, she was in and out of the hospital about once per year for about 6 years for respiratory related issues.  She was back in the hospital two times in 2012 but is generally an overall healthy child.   Marie’s husband Bob, their son, Benjamin, born in 1998, and their vizsla, Sammi, have been an integral part of managing Anna’s care and well-being.  Marie has a BSEE from Duke University and they are members of First Baptist Church in Reading, MA.  Because of the amazing support of her employer, she was able to take maternity leave when Anna was born and worked part-time for many years.  She currently works full-time in the telecommunications industry and is the CHERUBS co-State Representative of MA.

MEET OUR VOLUNTEERS - Chris Weaver

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.

MEET OUR VOLUNTEERS - Jade Hunt

Jade Hunt My name is Jade Hunt. I reside in Addison, VT and am the VT Representative for CHERUBS. My son, Liam Anthony Hunt, was born on May 22, 2011 in Middlebury, VT with a previously undiagnosed right CDH. Liam was airlifted to Dartmouth Hitchcock Medical Center in Lebanon, NH for stabilization and then transported to Children’s Hospital Boston in Boston, MA. Liam underwent two rounds of ECMO intervention. Shortly after coming off ECMO the second time, Liam developed acute tracheitis from lengthy intubation. On June 25, 2011, Liam earned his Angel Wings. I am also the proud mother of Landon Robert Hunt, age 3, and the wife to my sons’ wonderful father, Dustin Hunt.

April 19, 2013 CDH Awareness Day Proclamation - Boston, MA

Boston, Massachusetts proclaims April 19, 2013 for CDH Awareness thanks to the efforts of the Landers family!

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

Gabe's Bowl-A-Thon

(From Corin)

The Bowl-A-Thon fundraising event was a huge success! We had over 50 people in attendance, including 6 CHERUBS families and 3 beautiful cherubs themselves! We succeeded in beating our fundraising goal, but best of all were able to have fun and spread some CDH Awareness to the local bowlers. The staff were very interested in what we were raising money for, and asked us to come back next year to make it an annual event

A big thank you to all who participated and to all those who sponsored the event!

For more information and photos, visit the New England CHERUBS blog at http://newenglandcherubs.wordpress.com/