© 2019 Congenital Heart Defects Families Association. All rights reserved

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O U R   S T O R Y

-  W H O    W E    A R E,   W H A T   WE   DO,   A N D    W H Y    W E    D O    T H I S  -

MEET VALERIE JANKE REXIN,
CO-FOUNDER AND EXECUTIVE DIRECTOR

Valerie Rexin is a Kansas City Area Autism Spectrum Disorder Consultant and the mother of two boys. In 1999, Rexin's first son, Noah was diagnosed in utero with complex congenital heart defects. After his birth, Noah spent his first eight weeks at Children's Mercy Hospital undergoing two open heart surgeries, two stints on ECMO (a type of heart lung bypass machine) and three heart catherizations. Noah struggled with feeding issues and delays after leaving the hospital, and continued with therapy throughout his life. In June 2001, at 23 months old, Noah underwent his fourth heart surgery, but it was not tolerated, resulting in a takedown. He passed away in his father's arms 11 days before his second birthday due to complications from surgery. Raising awareness of congenital heart defects is a very important part of Rexin's life. She organized the Families Raising Awareness Heart Walk team for the American Heart Association in 2002, not only as a remembrance of Noah's June birthday but as a way of bringing together Kansas City families touched by heart defects.This heart walk team grew into Congenital Heart Defects Families Association. Rexin also serves as a council member for The CHD Awareness Quilt Project, Inc. as the project's Quilt Historian and Loss Liaison. Rexin's husband, Jonathan, serves as Executive Secretary of the Association.  Contact Valerie:  valerie@chdfamilies.org

VALERIE REXIN WITH HUSBAND JONATHAN, SONS JONAH  AND NOAH REXIN.
MEET JULIE THOMAS, CO-FOUNDER, DIRECTOR AND COUNSEL

Julie Thomas is a Kansas City Area attorney and mother of three. After the birth of her twins in April 2000, doctors discovered that her son, Atley, had a very rare and deadly congenital heart defect which would require immediate open heart surgery. He spent his first two months of life in the PICU at Children's Mercy Hospital, surviving two open heart surgeries and two heart catheterizations. Atley's recovery has been slow and complicated, including severe feeding issues, mild cerebral palsy, serious developmental delays, and additional cardiac procedures. This prompted Thomas to quit her law practice and concentrate on her children at home. She now devotes much of her spare time and energy to raising money for congenital heart defects research and supporting other families in similar circumstances. As a top walker for the American Heart Association, she has received many awards, and Atley was chosen as the Kansas City Heart Walk Child in 2005.  She designs many of the Association's awareness products, logos, and American Heart Association Heart Walk team shirts.  In addition, in honor of Noah Rexin's fourth birthday, Thomas began the "Blankets from the Heart" project to provide cheerful, 100% cotton blankets to children undergoing cardiac procedures at Children's Mercy Hospital.  Atley will undergo his next open - heart surgery in April, 2014.  Contact julie at:  julie@chdfamilies.org

​JULIE THOMAS, WITH SON, ATLEY, 13 YEARS OLD.

-   M E E T    O U R    V O L U N T E E R    C O O R D I N A T O R S   -

MEET JAMIE BOLEN, PUBLIC RELATIONS COORDINATOR

Jamie Bolen works with outside groups to build connections for CHD Families. She is mom to Riley, Lindsey, and Bryce (HLHS).

 

​JAMIE BOLEN AND FAMILY.

MEET KRISSY RINGO, HISTORIAN

Krissy Ringo serves as CHD Families' historian.  She maintains the CHD Families "yearbook". She is mom to Zach, Ayla, Matthew, and wife to Kevin. 

​ KRISSY RINGO AND FAMILY.
MEET PEGGY WIENS, MANHATTAN AREA COORDINATOR

Peggy Wiens serves as CHD Families' Manhattan area coordinator. Peggy is mommy to Carter and Maura (single ventricle).

 

​PEGGY WIENS AND FAMILY.
​PEGGY WIENS AND FAMILY.
JILL GETMAN, DONATIONS COORDINATOR

Jill Getman serves as CHD Families' donation coordinator. She manages incoming donations that are in memory or honor of someone.  She also coordinates Doctor/Nurse Baskets.  Jill is mother to Regan (TGA) and Jack, and wife to Brad.

 

CARRIE EASLEY, CAREPACKAGES COORDINATOR

Carrie serves as CHD Families Carepackage coordinator.  She maintains our store of blankets, toiletries and other items and puts together boxes as needed by Children's Mercy Hosptial.   Carrie also manages the deliveries of the boxes to Children's Mercy.

POLLY GIEBLER, CENTRAL KANSAS COORDINATOR

Polly Giebler manages the Central Kansas CHD Families’ satellite meetings and family activities for Wichita and the surrounding areas. Polly is mommy to Elizabeth TOF, PFO and to Robert VSD, PFO.