As any parent of a child with cystinosis will tell you, life with the disease can be like a roller coaster.
Some days are filled with highs; others with lows. You can be fine one moment, and the next everything is upside down. And you never really know if the next bend in the road will send you climbing up or plummeting down. In short, it can be incredibly stressful.
But at least one family living with cystinosis has embraced the roller coaster ride. Quite literally. Eleven-year-old twins Patrick and Jenna Partington of Sacramento were invited to take a personal “backstage” tour of the new Batman-themed roller coaster “The Joker,” as it was under construction at Six Flags Discovery Kingdom in Vallejo.
Patrick loves roller coasters and would love to design them one day. As part of his all-access tour, Patrick got to drill the site foreman with questions about all the finer points of coaster construction; his sister and mom, meanwhile just drank in the coolness of it all!
The trip was a great gift back to a family that’s already given so much of their time to the cystinosis community.
After their diagnosis at the age of one, the twins’ family created the Jenna & Patrick’s Foundation of Hope to raise awareness and funds for research. As the Foundation’s website notes, the current life expectancy for people with cystinosis is 27. But with the research being done now—thanks in part to Jenna and Patrick and everyone who supports them—who knows what the future hold? It may just be that the greatest thrill rides of tomorrow will be designed by a cystinosis patient who survived his own real-life roller coaster.
Then visit Jenna & Patrick’s Foundation of Hope to learn more.