News Headlines Article

Heartbreaking struggle with a rare disease
Sacramento Business Journal

Jenna and Patrick Partington were born healthy in December 2004. By six months, the twins began to weaken. One or the other — or both — vomited daily. They inexplicably stopped thriving — and their parents began a frantic odyssey to discover the cause. They were eventually diagnosed with cystinosis, a fatal metabolic disease that affects 500 children and young adults in the U.S. and 2,000 worldwide. Unlike cancer or neurological conditions that affect millions, rare diseases like cystinosis — sometimes called “orphan diseases” — struggle to attract research dollars and support.