Neveah

Nevaeh is diagnosed with pulmonary vein stenosis, a rare, chronic, and potentially fatal cardiovascular condition that occurs when the pulmonary veins that carry oxygenated blood from the lungs to the heart become narrowed or blocked.

Nevaeh had her first open heart surgery when she was 12 days old and weighed less than 4 lbs. Her family was told that she wouldn’t live longer than a year.

From December 2020 to March 2021, Nevaeh spent more time in the hospital than at home. In April 2021, Nevaeh's family was put in touch with Boston Children’s pulmonary vein stenosis coordinator and placed on a waiting list for treatment. They accepted and had a placement for her after only a couple of weeks.

The next challenge was for Nevaeh's family to figure out how to fly to Boston on a day's notice and that is when they were introduced to CFOH! Nevaeh's first flight with CFOH was on May 1, 2021. Nevaeh and her family have now flown 30 times to Boston for treatment, and it’s still just as invasive, but Nevaeh knows that her family will always be with her because of CFOH.

We are rooting for you, Nevaeh!