Twins Jenna and Patrick Partington have cystinosis. You’ve probably never heard of this genetic disease. Their parents hadn’t either until the children were diagnosed at 15 months of age. Both parents are healthy but carry a recessive gene that, unbeknownst to them when starting a family, combined to give the twins this rare disease. There are only about 2,000 cases worldwide and 500 cases in the U.S.
“Cystinosis is terminal, so it’s not for the faint of heart,” says the twins’ father, Kevin Partington. He and his wife Teresa established the Jenna & Patrick’s Foundation of Hope on passion. “It’s a grassroots effort from the heart and a nonprofit in the simplest form — we have no offices, staff or salaries, and only ourselves, friends and family as volunteers — with a mission to cure cystinosis.”
Jenna & Patrick’s Foundation of Hope has a parent organization, the Cystinosis Research Foundation. “We were established in 2006, but they were founded in 2003 and were ahead of us with scientific research and grants, so we saw no point in duplicating efforts,” says Kevin. “We raise funds locally, then present that money to CRF, where it goes straight to research.”
Today, the twins are 15-year-old high school freshmen, Jenna at
St. Francis Catholic High School and Patrick at Jesuit High
their battle against the multiple debilitating effects of cystinosis is ongoing. “They each take 54 pills daily, which isn’t a cure, but prolongs life,” Kevin says. “Beyond the disease, that much medicine takes its toll, and they’ll both need kidney transplants soon — just one example of their struggles.”
Advances in medicine have increased life expectancy from about age 9 a few decades ago to almost age 30. Stem cell therapy represents hope for a cure and is making strides with its first patient trial. “Our goal is to raise at least $250,000 annually, and we’re grateful to anyone who helps us reach that,” Kevin says. If anyone would like to donate, please visit the website at www.jpfh.org.