Jennifer Thomas

My Great Strides Story

Our daughter, Ava, was diagnosed with CF (a progressive, genetic disease that affects the lungs, pancreas, and other organs and that requires lifelong treatment, management, and care, but for which there is currently No Cure. https://www.cff.org/intro-cf/about-cystic-fibrosis ) at 3 weeks old after her newborn screening came back abnormal. We were referred to a Pulmonologist, where her diagnosis was confirmed after 2 abnormal sweat tests.

We maintained and managed her health by taking her to her quarterly Dr appts, feeding her high fat meals to maintain her weight along with her pancreatic enzymes, breathing treatments, and her CPT vest therapy daily for the first 4 years of her life.

Just after Ava's 4th birthday in April 2022, she had her very FIRST EVER ER visit which turned into her first ever hospitalization. She was diagnosed with MSSA Pneumonia, intubated and placed on a ventilator on the 2nd day of her admit. They transferred her from our local hospital to Children's Hospital in New Orleans (CHNOLA). We were hopeful that Ava would be able to come off of the ventilator by the end of the week. Unfortunately, that was not the case. Ava was airlifted to Texas Children's Hospital (TCH) in Houston in the early hours on May 3, 2022.

My husband and I went home to pack, get a few hours of sleep, then drove to Houston to be with Ava. On May 5, 2022, Ava was placed on V-V ECMO because her lungs were not able to oxygenate her blood. She would remain on ECMO for 207 days, the longest ECMO run recorded In history at TCH.

Ava was ultimately evaluated and officially listed for a bilateral lung transplant in July. We got the call November 27, 2022 that Ava would be receiving her gift of life the NEXT DAY! On November 28, 2022 Ava received her Pink Princess Lungs at the tender age of 4. She was finally discharged from the hospital on March 6, 2023 after being inpatient for over 300 days. We had to stay in Houston for 3 months post-transplant for follow up visits, weekly labwork, and physical/occupational therapy. Ava was so deconditioned from being in the hospital while awaiting transplant.

We came home to Louisiana on June 3, 2023 after being in Houston for 13 months!! Ava continues to do PT/OT/ST 3 times a week and is growing stronger each day! She is also on an anti-rejection regimen which has caused her to be extremely immunocompromised. We are currently home schooling her for Kindergarten. 

Since her bilateral lung transplant, Ava does not currently show symptoms of CF in her lungs. She does, however, still have CF in the rest of her body including her sinuses and trachea leading to where the donor lungs were attached. Ava continues to do breathing treatments and her CPT vest therapy daily as well as take her pancreatic enzymes with meals.

To know Ava is to love Ava. She has made her mark in this world at a very young age. She is smart, sassy, and the strongest little CF Warrior!

There is currently no cure for cystic fibrosis. By participating in Great Strides, we are helping to end this disease for thousands of people impacted by CF.

Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues.  

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

Your support makes a difference.

By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.