2024 Team Resilient Ryleigh Rose Congential Heart Walk T-Shirts:
https://www.bonfire.com/resilient-ryleigh-rose-heart-walk-2024/
After 36 weeks of a seemingly normal pregnancy, on Friday, March 18, 2022 we learned that our baby girl had developed a congenital heart disease late in the pregnancy with no warning signs. Ryleigh Rose was born on Saturday, March 19th, 2022 and we didn’t know if we’d have her for long. Defying all odds, our Resilient Ryleigh Rose blessed us with 5 amazing months. She was a fighter and surprised everyone along her journey.
Ryleigh's official diagnosis was Cardiomyopathy with Severe Biventricular Hypertrophy and Dysfunction. The conversation of a heart transplant started on Day 3, but Ryleigh Rose had other plans. After 2 weeks at Cleveland Clinic, our little fighter allowed us to enjoy 6 beautiful weeks at home. While at home, Ryleigh was able to meet family and friends, celebrate Easter, went to a drive-in movie and the Zoo. Ryleigh was readmitted on May 26th, 2022 and was officially placed on the heart transplant list on May 28th, 2022.
At Cleveland Clinic, Ryleigh Rose was known for her BIG bows, her BIG personality and her BIG smile. She was the happiest baby with every reason not to be. Her smiles came often and in many different varieties. Her outward appearance never matched how sick her heart truly was. Ryleigh Rose loved talking to anyone who visited and always watched the nurses intentily with her big eyes. Ryleigh Rose enjoyed laughing at Dad as he danced and sang Taylor Swift. Ryleigh also enjoyed Below Deck and The Office while cuddling with Mom. Ryleigh Rose made everyday a blessing.
On July 13th, 2022, Ryleigh Rose became the youngest person at Cleveland Clinic to receive a BiVAD. Our fighter was nicknamed a "beast" and showed her resilience while recovering from the risky, but life saving operation. Despite her strength and resilience, Ryleigh Rose became our Heart Angel on August 19th, 2022. Five beautiful months we did not think we would have with her. We cherish those big smiles, chats and cuddles that she gifted to us. We miss her every second of every day and hope her story helps another family some day.
