NORTHBRIDGE, Mass. – About 30 motorcycles and a couple of classic cars left The Hawk’s Nest on Plummer Avenue Saturday morning, the roar of the motors short-lived in the Whitinsville neighborhood as they headed toward Connecticut and the midway point of the route.
They were riding for a cause, a cure for MECP2 Duplication Syndrome – and a little boy, 5-year-old Joshua Bishop. Joshua is the son of Amy and John Bishop, formerly of Sutton who now lives in Wales.
Bishop and her sister Karen Tavernier started the MeCP2 Foundation, the money raised goes toward research on the rare syndrome being conducted at just one place in the country – Baylor College of Medicine in Houston, Texas.
The syndrome was first discovered in 2005 and Joshua was probably one of the first tested for the disorder, his mother said. The diagnosis took about a year.
The symptoms can include delayed development, sometimes severe development in sitting, crawling and walking, limited or absent speech, intellectual disability, recurring respiratory infections, Elipisy, and more.
“For someone with his disability, Joshua is healthy,” Bishop said. “He doesn’t talk and his gets sick easier, but he is more mobile than most kids (with the disability).” He is in an integrated classroom in the Wales School District.
Bishop said she first noticed Joshua was not developing normally at about 9 months. Testing for the syndrome was done at the University of Massachusetts in Worcester.
It is a syndrome passed on, typically to males by a mother carrier. Bishop, however, is not a carrier so Joshua’s condition is considered “spontaneous,’’ she said. Joshua has a 7-year-old brother Robert.
There is no treatment, something Bishop hopes the research will change. The life expectancy for those with MECP2 is 25 years.
The MeCP2 Foundation Committee, which put together the motorcycle route made up of Bishop and Tavernier, who lives in Holland, Michelle Horne of Auburn, Mara Racicot of Leicester, Jen Reed of Stockbridge, and Tarrin Lutz of Worcester.
The ride, the third annual, ended with entertainment and a barbecue at The Hawk’s Nest.