Last May, Jonah was diagnosed with Sanfilippo syndrome type C, an incurable and extremely rare disease that affects one in 1.4 million children in the U.S. Jonah may have only two more years of relative health, doctors say, before he starts to show symptoms: mental retardation, bone deformation, organ and tissue damage. Children with the disease face death before adulthood.
Jill Weishaar is determined to use every moment to help find a cure. She needs to find enough children like Jonah, believed to be the only youth in New York City with the condition, to justify a study by Dr. María Escolar, a North Carolina genetic disease specialist. To raise awareness and reach out to other families, Jonah’s parents created the Jonah’s Just Begun Foundation To Cure Sanfilippo Inc.
Five families with children with the condition have agreed to the study and Jill Weishaar has heard of three more overseas. Once 10 families agree to participate, Escolar will conduct her study and present her findings to drug companies to help develop a cure.
Jill Weishaar, an apparel designer, stays at home caring for Jonah and running the foundation. Her husband, an NBC cameraman, supports the family through his job, which includes crucial health insurance benefits.
“I’m going to find a cure in Jonah’s life and giver life to my son once again,” Jill vowed.