Ryleigh Levensailor

Ryleigh’s Story

“She is our little warrior princess and we wouldn’t change her for the world.”

Ryleigh Levensailor, Trisomy 18, 10-14-2016, NY

Ryleigh was born on October 14,2016 at 2:04 am by emergency C-section I was 38 weeks pregnant. I did not have any testing done during pregnancy bc whatever she had I was going to still have her and take care of her. We had never heard of this before she was diagnosed at a week old. We were given no hope and for 2 days I cried while we made the choice to bring her home thinking we only had days with her we didn’t want her only view be the NICU. So at 11 days we brought her home on hospice. She has a VSD and an asd, her pda valve isn’t closed all the way and she also has a double outlet right ventricle her brain is not developed in the back which they call cerebellum hypoplasia. Her head is strawberry shaped, her heels are pronounced, her fingers are clasped but loosening up and her musclesister are tight working with PT to make her more mobile. She is currently 100% gtube dependent she had it placed at 5 months at the same time she had her tongue tie clipped, she was 4 lbs 16 inches long at birth. At a year old she is 9 lbs 3 oz and 22 1/2inches long. She is our little warrior princess and we wouldn’t change her for the world. We are waiting to see what her next cardiology report says before we decide on surgery . Her heart is not failing but she is being monitored for heart failure. We live in central NY . She fights everyday to survive.