The Story of Rori
Our story really began on January 26. Our doctor had some concerns that Rori was underweight. We had a few procedures done to find out what might be causing the problem and Rori was diagnosed with Trisomy 18. This is a chromosomal defect where there are 3 copies of chromosome 18 instead of 2 in each cell.
Although this is a very common chromosomal defect, most babies miscarry in the 1st or 2nd trimester and the children that deliver unfortunately have a very low survival rate past the age of 1. Upon this diagnosis, the doctors gave us the option and encouraged us to have her delivered right away if we wanted to see her alive and maybe in their mind since there wasn’t a medical reason that she would live. Despite that report, our choice was clear, we would give Rori a chance at life and let her go full-term and if we were so blessed to have a miracle, then she would need our strength, faith and love.
On March 2, at 7:42am, Rori Christianne graced us with her beautiful cry. She was a lean 4 pounds 8 ounces and 17.25 inches long, we had been blessed with the gift of life. She had amazingly gained over a 1.5 pounds in the last 5 weeks by us choosing to have her go full-term and getting her to a healthier weight. There were certainly a few moments early on that were scary as parents, but Rori continued to fight and show her heart of a champion.
We were so blessed to bring her home with us on March 7. She needed the aid of a little bit of oxygen and still had a feeding tube in her nose, but she was with us.
Over the following 2 weeks, we certainly had our challenges as parents, balancing an active 16 month old Michela, sleep deprivation and noisy oxygen machines, but through it all Rori continued to show improvement. She gained 11 ounces in the first 8 days of being home and we had increased her feedings by 20%, something the doctors didn’t expect for a month. Needless to say, we as well as our doctors and nurses were very encouraged by her progress and surprised by her passing. Early the morning of March 22, at 12:30am as we woke to give her a feeding, we found that she had peacefully died in her sleep. We had known that this was a possibility and common way of death for Trisomy 18 babies, but we never thought about it or lived in fear of it happening.
Words cannot express the hurt of this loss of our daughter, but in the 20 days that Rori brought joy to our lives, we learned so much. Behind the oxygen and feeding tubes was an absolutely beautiful baby. Her perfect little nose and lips were noticeably attractive and of great resemblance to her sister Michela. But the lessons that Rori taught us will never leave us. First of all, we learned to take life one day at a time. Making plans for the future is okay, but love, cherish and live each day for what it is, the good, the challenges and opportunities. Tomorrow, if we are blessed with it, will have its own time, but live out today. Secondly, you never know what someone is going through in their life. If someone doesn’t greet you with a smile, is seemingly distracted or just isn’t driving fast enough ahead of you, do we know what a day is like in their shoes? Most of you did not know what a day was like for us and by our choice, this was a journey that we were on and we took each day one at a time.
We would never wish what we went through on anyone but we do feel great compassion for any who have lost a child, it is a loss and pain that I never imagined possible. But we say beyond a shadow of a doubt, “we would rather have had and lost, then never had at all.”
The 20 days with Rori are never going to be enough, but she is always loved and never forgotten.
The Establishment of The RCK Foundation
The Rori Christianne Keller Foundation was started four years ago after our daughter Rori, passed away on March 22, 2010. When Rori died, we didn’t want to think anymore about doctors, hospitals and disease. We just wanted to take our loss and sadness and create decades of joy and laughter in a safe environment for families in honor of Rori. The first thing came to mind was how much fun we as a family experience at the local playground with our daughter Michela. It was only fitting for us to establish a nonprofit to build barrier-free playgrounds for children, both those with and those without disabilities. Each playground costs anywhere from $150,000 – $350,000 depending on the size and features.
The Rori Christianne Keller Foundation is a Section 501(c)3 organization. Gifts are tax deductible.
Andrew Keller and Danielle Moreland