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Thread: Florida news and fighting CDH!!

  1. 11-15-2013, 10:50 AM #1
    Chris and TracyMeats
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    Florida news and fighting CDH!!

    Great news out of Florida about one of our CHERUBS Medical Advisors and the incredible work he does for CDH babies!

    Dr. Kays is, and has always been, a huge supporter of our charity and CDH families. He attends our conferences, goes to Capitol Hill with us to advocate for more federal research money for CDH and holds April 19th events in Gainesville. Not only is he part of our CHERUBS family but to his patients and their families, he is superman. We are very proud to work with him!

    https://m.ufhealth.org/news/2013/uf-...ref_map=%5B%5D
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org
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  2. 11-15-2013, 07:36 PM #2
    AmandaPlakholm
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    Thank you Dr. Kays for all that you do for Cherubs and their families!
    Amanda Mother of Liz born 09/09/2002 with LCDH,Emily 05/27/2005. Liz was diagnosed at 12 weeks in uetro 90 percent of left diaphragm missing. Gortex patch put in at 3 days old. Ever abdominal organ other then kidneys herniated. Born at 38 weeks, 6 lbs 11oz. Born in Hamilton ON. Hospitalized for 6 weeks. Rehirniated at age 6 and 3 surgeries age 10 almost lost my Cherub again. Duplication cysts on her stomach. Reflux and on going GI issues.
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  3. 11-21-2013, 10:40 AM #3
    freedom
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    Awesome! He is one amazing Dr.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH 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 . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )
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  4. 11-21-2013, 11:13 AM #4
    FeleciaWoodruff
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    Awesome!
    Felecia Marie Woodruff- CHERUBS Volunteer
    Pennsylvania State Representative, Awareness Committee Leader, Parent Advisory Board Member
    Daughter, Hayden, DOB October 8th, 2009. CHERUB SURVIVOR son, Bryson, DOB July 30th, 2012 born at The Children's Hospital of Philadelphia.
    21 Days ECMO, 6 Days Oscillator Ventilator, Day 32 CDH Surgery, Day 35 Got to hold him for the 1st time, 25 Days Conventional Ventilator plus 21 Days while on ECMO, 4 Days CPAP, 17 Days Nasal Cannulas, Day 90 Came Home from the NICU
    Bryson's Facebook page: www.facebook.com/brysonsbattleprayerpage
    My Facebook page: https://www.facebook.com/felecia.woodruff
    Email: fwoodruff@cherubs-cdh.org | awareness@cherubs-cdh.org
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