Ava Elizabeth was born on November 11th, 2012 with a genetic syndrome called 4Q Deletion.  With 4Q Deletion, part of the fourth chromosome is missing and can result in congenital heart defects as well as other symptoms.  Ava has Hypoplastic Right Heart Syndrome (HRHS) and Pulmonary Atresia.  She is also missing her left hand and has a cleft palate, which are conditions of the syndrome as well.   HRHS means the right side of her heart did not form correctly and Ava has undergone three open-heart surgeries to repair her heart.  The surgeries have rerouted her circulatory system so that the left side of her heart does the work of both sides.  With Pulmonary Atresia, the pulmonary valve did not properly form and was also fixed surgically.

Ava spent her first seven months of life in Childrens Hospital in Cincinnati, Ohio with her parents by her side. She has been living at home with her four sisters and parents for almost two years now.  In just two years of life, Ava has been through over 20 surgical procedures. The goal for Ava’s parents is to keep Ava’s and her siblings’ everyday lives as normal as possible.  You can spot Ava around town with her family doing everything the rest of the family does!

Ava is also quite the traveler, with a trip to Disney, Myrtle Beach and three vacations to Gatlinburg, Tennessee all under her belt!  Ava continues to make huge strides every day.  She does use a ventilator but is very close to being off it 100%.  Currently, Ava sleeps with it in CPAP mode. She walks with the help of a gate trainer and is starting to talk with a speak valve in her trache.

Ava is a huge inspiration in so many lives – she continues to beat the odds on a daily basis!  “We’re thankful to have this star in our lives.  We do not know what the future holds, but we will continue to embrace it day by day and make the best of everyday we are given!”

Follow Ava’s inspirational journey on Facebook: PrayerChainForBabyAva