Team Resilient Ryleigh Rose

Thank you for visiting our team page! Every 15 minutes, a baby in this country is born with a congenital heart defect, making CHDs America's most common birth defect. The Congenital Heart Walk is dedicated to raising funds to support The Children's Heart Foundation's mission: to advance the diagnosis, treatment, and prevention of CHDs by funding the most promising research. Will you join us? By supporting our team or joining us in our walk, you're supporting research that will help save and improve the lives of babies born, and children and adults living, with CHDs. Thank you!

Ryleigh Rose's Journey

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. But she was a fighter and surprised everyone along her journey.  Our Resilient Ryleigh Rose blessed us with 5 amazing months.  Defying all odds.  


Ryleigh's official diagnosis is Cardiomyopathy with Severe Biventricular Hypertrophy. This is very rarely/if ever diagnosed in a baby. The conversation of heart transplant started on Day 3, March 22, 2022.  However, after 2 weeks at Cleveland Clinic, our little fighter allowed us to enjoy 6 beautilful weeks at home.  Ryleigh was readmitted on May 26th, 2022 and was officially placed on the heart transplant list on May 28th, 2022.


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.  Ryleigh Rose loved talking to anyone who visited.  Always laughed at Dad as he dance and sang Taylor Swift.  Ryleigh enjoyed Below Deck and the Office while cuddling with Mom.  Ryleigh Rose made everyday a blessing. 


On July 13th, Ryleigh Rose became the youngest person at Cleveland Clinic to receive a BiVAD.  A very risky procedure on such a small person.  Our fighter was nicknamed a "beast" and had doctors high fiving after a successful first few days.  Despite her resilience, Ryleigh Rose became our angel baby on August 19th, 2022.   


Thank you to our family and friends who rushed to be by our sides.  Those who took the time to make memories with our angel, Ryleigh Rose, who was taken too soon.  Thank you to the doctors and nurses at Cleveland Clinic who fought along with Ryleigh every second of every day.  You became our family along this journey.  


Resilient Ryleigh Rose T-Shirts can be purchased in the links below:


*No profit is made off of t-shirt sales.  This is strictly cost of materials.*

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  • Anonymous September 2023
  • Chris Hagerty August 2023 $515.00
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  • Chris Hagerty August 2023 $515.00
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