Bailey's Story
Bailey was born on July 8th, 2010 in Las Vegas, NV. She arrived a little early but seemed to be doing fine. However, she developed an intestinal infection and had to have emergency surgery. Bailey spent the next four months in the Las Vegas Spring Valley Hospital Neonatal Intensive Care Unit.
While we were in the NICU our family came up with the idea to produce a charity barrel race to help other families with sick children and to help out the very special doctors and nurses that staffed that unit.
We contacted Michael and Paula Gaughan who are the owners of the South Point Hotel, Casino and Equestrian Center to see if they could help us make this dream a reality. They generously donated the use of their amazing equestrian facility in November of 2011 for us to hold the first annual Buckles and Barrels for Bailey.
The first event was a huge success and we raised thousands of dollars which we donated to the Spring Valley Hospital Auxiliary. We were able to pay for some specialized training for the NICU staff, buy some much needed equipment and create a parent's room for families preparing to take their babies home from the NICU.
We realized that what we really wanted to do was to help other families with sick and injured children so we created our own 501c.3 under the name Because of Bailey and gained approval in 2017. Our mission is to help families with sick, injured and terminally ill children with medical expenses, the purchase of specialized equipment, travel expenses and the day to day costs to keep a household running while a child is in the hospital.
When Bailey was about three and a half years old we began to notice that she was struggling. She tripped and fell constantly, began stuttering, and started having seizures .We took Bailey to numerous specialists only to have her misdiagnosed over and over.
In September of 2016, a week after Buckles and Barrels for Bailey event, Bailey was admitted to UCLA Children's Hospital where we would finally receive the correct diagnosis. We were devastated to learn that Bailey has a rare degenerative terminal illness called Battens Disease (CLN 6).
We were told that Bailey didn’t have much time and that she would deteriorate quickly until her little body just gave up. However through hope and faith, our family refused to give up. We started doing research and discovered the Charlotte and Gwenyth Gray Foundation.
The Gray family has two daughters with the same diagnosis. They funded the research for a clinical trial initiated in Columbus, Ohio at Nationwide Children's Hospital. The trial involves injecting a replacement gene into the child to stop the progression of this terrible disease. Bailey was admitted to the trial and was the 5th person in the United States to receive a gene transfer.
Our hope was that the gene transfer would stop the progression of the disease and that Bailey might find her way back to us. It slowed the disease down and gave us more time but sadly Bailey lost her fight on October 4th, 2021. She always belonged to God and thankfully he let us live in her light for awhile. We are heartbroken and miss her sweet soul but we also know that her legacy will be one of hope, love, faith and strength. We will continue to honor her memory, cherish the relationships we have built through her and fight on for the other families out there battling for their own kids.
Buckles and Barrels for Bailey has raised thousands of dollars for families all over the country and has partnered with Ropin' Dreams to continue to lift up families while they face their worst nightmare. Please join us in making a difference.
