I was in AZ last weekend to participate in an event for TGen’s Center for Rare Childhood Disorders and the Wylder Nation Foundation. The event consisted of a tour of TGen’s research facility followed by a dinner with the employees and families associated with the Center for Rare Childhood Disorders then participation in the PF Chang Marathon the following morning. Matt (Co-director) gave an exciting tour of TGen explaining the scientific advancement of genome sequencing and the awesome potential for our future. I was so impressed with not only his excitement for the technology but also his passion for the rare disease community.
My sponsors of course were the Laffoon family (Shannon and Steven) who should be well known to this community from the many posts over the last year. During the weekend, we spent many hours talking; sharing with me the many intimate stories of Wylder, what they had to overcome, and what they had to endure over that 2+ year period as they tried to understand their son’s future.
Wylder passed away on July 20, 2012 from Niemann-Pick disease.
I also met many other families including my newest partner family Sara & Dave.
Their daughter, Mylee Grace, passed away one month before Wylder from Mitochondrial disease on June 21, 2012.
As I spent time with many of the families, I was deeply moved by the sense of community. Everyone knew each other; the families and TGen employees, and they were all so incredibly welcoming of me. Though everyone had a different story, they all had one thing in common; the Center for Rare Childhood Disorders and one Dr. Narayanan (Medical Director). I marveled as I watched Dr. Narayanan connect with each and every family at the dinner. He also wrote every child’s name on the back of his shirt as he ran the PF Chang half marathon the following morning. It became quite clear to me during the weekend that this community has an unbelievable ability to deal; a capability to overcome the most challenging of obstacles including the tragic loss of a child. They have an amazing level of resiliency.
We as a marathon team have been given the opportunity and honor to partner with families just like those connected to the Center for Rare Childhood Disorders. Their resiliency is contagious. We are learning, improving, and growing together as a community. Our passion is increasing daily. Our community is expanding as people are seeing what’s happening and wanting to be involved. I believe we are all unknowingly learning the magic of resiliency. We are growing a community of people connected and engaged with this greater rare disease community and we are in fact, ‘changing the world’.
In closing, I want to quote Shelby, a 12 year old who I also met last weekend and who has been suffering from a Neurotransmitter metabolic disorder. A short video of Shelby can be viewed at this link. She closes with this quote “I have some advice to give other disabled children. I know how you’re feeling. Never give up because even though there are some hard times, the embarrassment, being made fun of and you know, not doing what other people do, I know how you feel. It’s hard sometimes. I get that, but you just never give up. Don’t let anything put you down. It’s not the end of the world. God made you for a reason and God never makes mistakes”…………….Even the kids are resilient!