After 36 weeks of a seemingly normal pregnancy, passing all tests and appointments. On Friday, March 18 we learned that our baby girl had developed a congenital heart disease late in our pregnancy with no warning signs. Ryleigh Rose was born on Saturday and we didn?t know if we?d have her for long. But she is a fighter and has surprised everyone along her journey.

Ryleigh's official diagnosis is Cardiomyopathy with Severe Biventricular Hypertrophy. This is very rarely/if ever diagnosed in a baby. The heart she has won?t support her. Which leads us to a heart transplant. This conversation started on Day 3, March 22, but after 2 weeks at the hospital and 8 weeks as an outpatient, Ryleigh was readmitted on May 26th and officially on the heart transplant list on May 28th.

We?re in the best place possible here at the Cleveland Clinic. The staff has been truly remarkable and we could not say enough great things about them. They have helped us every step of the way. From those in the SDU, PICU, specialists, and doctors.

Thank you to the family who rushed to see us during some precious hours and for all the help back home. Thank you to all who have reached out. You have no idea how much it means.

Ryleigh Rose is our hero and a fighter!