Rhiannon’s Kids gets rolling

(Photo: Susan Morning)

In life, it is not our experiences that make us unique but the way in which we come out the other side that makes us special. For Amanda Taylor, the birth and subsequent death of her daughter left her and her husband, Gabe at a crossroads: would they deal with the experience by following a path of despair or one of creation?

While some people in a similar situation may choose to wallow in grief, Amanda chose the latter path and turned her experience into something productive by creating Rhiannon’s Kids, a new children’s fund in Mammoth.

“Rhiannon [the Taylor’s daughter] thrived during her short life,” Amanda said. “It was due to a combination of her stubbornness and the love she received.” Support and love came not only from her parents, but from the local community and her doctors as well.

Rhiannon Lynn Taylor was born in October of 2009. Amanda had enjoyed a healthy, happy pregnancy, so it came as a huge surprise when Rhiannon was diagnosed with Trisomy 18, a terminal genetic disorder, at birth. Rhiannon was born with two severe holes in her heart as part of the disorder, and 138 days later she died of congestive heart failure.

“TR-18 is an extremely rare genetic disorder,” Amanda explained. “Most infants with this diagnosis don’t survive the first week. They are often described as being incompatible with life.”

Shortly after her arrival into this world, Rhiannon was flown from Mammoth to Reno, Nev. in order to receive the specialized infant care she required.

“There’s a misconception out there that your health insurance will help cover your travel expenses in situations like these,” Amanda said. The Taylors quickly realized this wasn’t true as they followed their daughter to Reno by car and spent several nights in a hotel room, footing the bill for gas, food and lodging while stressing over their daughter’s well-being.

Rhiannon spent the majority of her 138 days at home, comfortable and loved. The Taylors knew her time was limited and chose to make the best of it, treating her like a normal newborn and allowing themselves to develop a strong attachment to their baby girl — a decision that made it both more painful and less when Rhiannon was no longer with them, according to Amanda.

“Since high school I’ve always wanted to make a difference in kids’ lives,” Amanda, who is currently working on her teaching credential, said. “Rhiannon added more depth to that purpose. It made me want to do more. And the support of the community made me want to be supportive back.”

So, earlier this year Amanda sat down with Gary Myers, former Mammoth Hospital CEO and current Chairman of the Board for the Healthcare Trust of Mammoth Lakes, Mammoth Hospital’s Foundation.

“I told him that I wanted to start a children’s foundation to help families with travel expenses when their kids have to go out of town for specialized care,” Amanda said.

Myers was supportive and suggested that Rhiannon’s Kids be created under the umbrella of the Healthcare Trust. Amanda next spoke with local pediatrician Dr. Amy Conrad about such a foundation, and was told that the need for that type of support was huge. The only thing left was to go before the Healthcare Trust’s Board and make the pitch.

Amanda made her presentation to the Board in March, the same month in which Rhiannon had passed away two years prior. She received a call almost immediately after leaving the boardroom saying that her request to start the foundation had been unanimously approved, and the non-profit quickly began to spread its wings.

Since March, Rhiannon’s Kids has put together a Board of its own made up of Amanda as Chairwoman, her mother-in-law Kathleen Taylor as Vice Chair, and Dr. Conrad and Dr. Kim Escudero (both of whom were Rhiannon’s pediatricians in Mammoth) as medical specialists. The Board is currently looking for a fifth member to serve as its Business Manager. Rhiannon’s Kids has also started receiving donations, and found several families in need of support.

While Gabe does not sit on the Board, his networking skills and connections throughout the snowboarding industry will serve as key elements in helping the organization as it grows.

Last weekend’s Dancing with the Docs marked another milestone for the organization as its first fundraiser.

Each doctor that danced in the event was competing for the charity of his or her choice. Dr. Escudero chose to dance on behalf of Rhiannon’s Kids and ended up raising between $2,000 and $3,000 (the numbers were still being tallied at press time).

“We were so happy to be a part of Dancing with the Docs,” Amanda said. “The event offered great        creativity and originality and really has potential to grow.”

As for growth with Rhiannon’s Kids, Amanda would one day like to see it serve the entire Eastern Sierra.

“We’re so remote here,” she said. “I want to be able to help families, to be able to make a small difference and give back to my community.”

Currently, Rhiannon’s Kids serves newborns to 21-year olds who have acute and chronic medical conditions and are established pediatric patients regularly served by Southern Mono Healthcare District. Doctors such as Conrad and Escudero refer children and their families to the foundation for assistance.

The support provided is designed to cover expenses for lodging, travel and meals in acute or emergency situations, or for scheduled medical services.

Rhiannon’s Kids is just ramping up and will have a website available soon to provide more information. For now, contact rhiannonskids@yahoo.com to learn more.