Skylar’s Story

As told by her father, Kip

When I was fifteen years old, my mom took me to get my driver’s permit. When I was filling everything out they asked if I wanted to be an organ donor. I immediately agreed, not understanding why anyone would say no. Turns out, I was the only registered donor in my family. For reasons beyond my understanding, it resonated with me. It would be 17 years before I knew how much.

August 7, 2010, my wife and I were blessed with a sweet princess named Skylar Tianna. 99 minutes later she passed away due to a severe birth defect. In her short time here on earth she changed the world.

On March 5th we went in for a fun 3D ultrasound and we received her diagnosis. We went in bubbly happy like we were first time parents but we came out shattered. I know for a fact Shannon spoke to me the whole way home but I’ve never been able to recall what she said, I was completely disconnected.

Through that weekend we decided we would do two things; we were going to carry to term, enjoying every minute she would be with us and we would be a donor family so that another family could go on.

There were several bumps along the way, biggest of which was a grey area in the organ donation laws and her particular diagnosis. Many friends and family members didn’t understand our desire to change this and make it possible for others in our position to become donors but we kept looking for a way. It became my mission to “fix the system”. After many twists, turns, and dead ends a wonderful man named Charles Bearden said he knew someone who could help. A few weeks later, Cynthia Willis from LifeShare Of The Carolinas (an organ procurement organization) reached out to us with a solution. They had found a way for Skylar to be a donor by donating liver cells to Cytonet.

Before Skylar, there was no protocol in our area for children younger than 2 to be donors. As of, what would have been her second birthday, there had been 50 families positively impacted by her journey.

To help raise awareness I was picked to ride on the 2011 Donate Life float in the Rose Parade in Pasadena, CA in Skylar’s memory. There were over 1 million people there in person to see the parade but if you ask our 5 year old, they were there to see “Skylar’s Parade”.

Skylar also inspired my wife to start Seasons of Grief; a company dedicated to helping families of loss find healing.

Organ donation gave us closure, a peace that I don’t know we could ever have found without it. Skylar’s journey was one of many tears of sadness but also joy. We may have lost a daughter that day but gained a whole new family, our Donate Life family. The people we have met are amazing, caring, and inspiring beyond belief. Some of the people that are closest to our hearts we have met through her journey.

Every parent wants his or her child to change the world and our little girl did just that.

You can read more about Skylar’s journey here: