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, Rosamond, CA

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 a double outlet right ventricle her brain is not developed in the back.  It is small but not too bad. Her head is strawberry shaped, her heel is pronounced, her fingers are clasped and her legs don’t straighten very much.  She is currently on an ng tube.  We are waiting for a call for her g-tube placement, she was 4 lbs 16 inches long at birth. She is gaining weight like crazy.  At 2 months tomorrow she is currently 5 lbs and roughly 6 ounces. She is our little warrior princess and we wouldn’t change her for the world.  She is currently not eligible for surgery because its in her best interest.  Her heart is not failing but she is being monitored for heart failure. Currently we are looking for hospitals and help in New York because all of our family is there and we have no one for support here in California. She fights everyday to survive.