"Our daughter, Bailey Rae Stevens, was born on July 8th, 2010. On July 12th, we were told that she developed a bacterial infection in her intestine that was spreading rapidly. By 6pm that night she was on a ventilator and by 9:30 that night her bowel perforated and she had to be taken into emergency surgery. The surgeon told us that there was no hope for her and that she probably wouldn't survive the surgery. We were told to kiss her goodbye. I will never forget the moment that I leaned in to kiss Bailey before surgery because she grabbed my finger and wouldn't let go. I thought she was saying goodbye but it turns out she was showing me how strong a little girl can be. Little Bailey fought as hard as she could and against all odds she did survive the surgery but lost 70% of her small intestine.
She spent the first 108 days of her life in the Neonatal Intensive Care Unit at Spring Valley Hospital in Las Vegas, Nevada. During this time my family met a very special group of people. The doctors and nurses that cared for Bailey as she fought to recover. Our family endured some highs and lows while in the NICU and these people, who didn't even know us, made that journey with us.
They were there when we cried, worried, laughed and celebrated. They have become family to us. They were with us 24 hours a day and when we couldn't be there they sent us pictures and updates. They bought her jambes, made bows for her hair and rocked her when she cried. They listened to us as we worried, hugged us when we cried and most important loved Bailey like she was their own.
Bailey came home in October 2010. She had a feeding tube and an I/V and we were told that we should expect a long, slow recovery. Bailey continued to prove everyone wrong and we were able to remove the I/V in March of 2011 and take her off the feeding tube in November just before the first annual Buckles and Barrels for Bailey. She had what we hope is her final surgery in March of 2012 to close up the spot where her feeding tube use to be.
We raised over $48,000 in five years and donated it to the Spring Valley Hospital Neonatal Intensive Care Unit. We were able to help with continuing education, remodeling the parents room and waiting room, purchasing educational reference material and supplies for the unit.
On October 31st, 2016 we received a phone call from the neurology department at UCLA that has changed our focus. Bailey was diagnosed with a rare terminal disease called Batten's Disease CLN6. Our family was devastated. We were told that Bailey probably didn't have much time and that she would deteriorate quickly. We were also told that there is no known treatment. A geneticist at UCLA told us about a family in Los Angeles that had two daughters with the disease that refused to accept that there was no hope. They formed the Gray Foundation and have made it their mission to find a cure. They have funded a clinical trial at Nationwide Children's Hospital in Columbus, Ohio and Bailey was accepted in to the trial February 10th, 2017.
We traveled to Ohio and Bailey was injected with a gene transfer on March 1st. It is our hope that this procedure has saved her life. No one knows if she can recover any of the speech or motor skills that were taken from her by this horrible disease, only time will tell. We have prayed for a miracle and we know that The Might B will fight as hard as she can to come back to us.
We have applied for our own 501c.3 under the name "Because of Bailey". Our goal is to help other families with sick and terminally ill children that are in need of financial assistance. We would also like to support the Gray Foundation and CureBatten.org in their fight against this disease.