Experimental drug provides hope for kids with rare disease
Niemann-Pick Type C, an extremely rare condition that generally affects school age children, is a fatal disease that blocks the body’s ability to metabolize cholesterol, which leads to neurological deterioration. The disease is so uncommon that previously it’s been difficult to diagnose as well as secure funding to research a cure. But now a pricey, experimental drug is giving the parents of these afflicted children hope:
The Hadleys are banking their hope on Zavesca, [a] drug that has slowed progression of the disease in some patients.
“It gives us time,” Bryan Hadley said. “We believe strongly in our faith and that God or doctors, or a little of both, will find a cure.”
The drug will cost about $108,000 per year per child, Hadley said. Their insurance will cover 50 percent, but the financial burden remains overwhelming. He is a wholesale distributor of cell phone accessories, and his wife works in real estate.
Bryan grew up in Salem and graduated from North Salem High in 1989. His family and friends have rallied to organize two local fundraisers to help with medical expenses and to benefit the Ara Parseghian Medical Research Foundation. The former football coach lost three of his four grandchildren to Niemann-Pick.
A wine-tasting event is March 7 at Capitol Chevrolet, and a basketball exhibition March 8 at Chemeketa Community College. For tickets, contact the Salem Family YMCA, (503) 581-9622.
“Because it’s so rare, there’s not a whole lot of money going into research for this,” Bryan Hadley said. “That’s why we’re trying to raise awareness.”
Information from: http://www.statesmanjournal.com/apps/pbc...
