I can remember following the story of Ruby Jane Taylor and feeling things I have never felt before. Having my own baby similar in age at the time, it really hit me hard. Everyday I felt emotional and every night our family prayed for her. I grew up with Ruby’s mom Ani and how she handled Ruby’s trial and passing was truly remarkable! She is a huge example of someone with faith and strength. Today Ani is not only sharing Ruby’s story with us but something really special she has started to remember her sweet daughter and raise awareness and funds for a great cause… The Ruby Jane Foundation.
“Just over 3 years ago, our second daughter, Ruby Jane, was born. I had a normal pregnancy and delivery, and was sent home with a “perfectly healthy baby”. The first two months went by so fast. I was loving having a newborn in the house again, and just getting a handle on having two kids. At her two-month well check, I brought up a concern with her doctor about her eyes still looking a little jaundice. He agreed, and sent us for some blood work. He called later that night and told us that something was very wrong with her labs, and that we would need to check into the hospital in the morning.
After about a month, a major surgery, many hospital visits, and a lot of tears, we had a diagnosis. Ruby was born with a rare (only 200 reported cases, EVER) liver disorder, with no easy cure. The only treatment for our baby was a liver transplant. We were in complete shock and devastation. She was quickly placed on the Liver Transplant Waiting List, and we began our wait. We spent most of the next 4 months at UCLA with her. It was the most trying time for our family. We tried our hardest to keep things normal for our daughter Kate, and try to spend as much time as a family as we could during that time.
We had a few calls of possible matches for Ruby, but each donor’s liver ended up being too large for a little 13-pound girl. When Ruby was 7 months old, she took a turn for the worse. She went from her smiling self to being intubated in just a couple of days. She was placed at the top of the list in the country as a Status 1A. On August 12, 2011, as her doctors were on a flight to retrieve her a liver, she passed away. Words cannot describe the anguish that our hearts experienced, and still experience to this day.
We started a non-profit charity in Ruby’s honor. It is called The Ruby Jane Foundation. In those first few months we put a lot of our grief into creating this foundation for our girl. We help families that have sick children, raise awareness about organ donation, and offer service to our community. Over 3,000 people have registered as organ donors in honor of Ruby!
Each year, we have a 5 and 10k, and also a Kids Run in honor of Ruby’s birthday. It is our biggest fundraiser for the year, which enables us to give support to families in need.
We would love for you to come! It is a really fun event for the whole family. We have free bouncy houses, face painting, and free Chick-fil-A! You can use Promo Code: “LUNCHPAILS” for $10 off the registration price. Sign up at: www.run4ruby.com“