Two Mattituck High School graduates who now live in North Carolina are fighting for the life of their young daughter, born in February and recently diagnosed with the rare genetic disorder known as Zellweger’s syndrome.
Chad Menard graduated from Mattituck in 1997 and his wife, Jen Smith Menard, in 2001. Their new daughter, Olivia Mae Menard, has a 4-year-old sister, Lila.
Chad is the son of Rich and Carolyn Menard of Mattituck; Jen’s parents are Cutchogue residents Jeff and Susie Smith.
Zellweger’s syndrome is a mutation of cell components known as peroxisomes, which act in the body’s metabolizing of fatty acids. The mutation keeps the body from breaking down fatty acids, leading to symptoms as diverse as impaired function of various organs, central nervous system issues and impaired brain development. There is no known cure.
According to the Menards’ North Fork friends, Olivia failed to thrive in the early weeks of her life, and it took extensive testing, not all of which was covered by the family’s insurance, to come to a diagnosis.
In addition, the family now faces a series of additional tests to determine which variation of the illness their daughter carries.
To help the couple defray expenses, their friends have organized a benefit summer’s-end barbecue at Founders Landing in Southold on Friday, Sept. 16, from 6 to 9 p.m. Karenann Volinski of Mattituck is also accepting donation checks, made out to Chad and Jen Menard, at 805 Theresa Drive, Mattituck, NY 11952. Tickets are $30, with no charge for children 10 and under.
“At this point in time there is still much testing to be done,” organizers said in a press release announcing the benefit.
“There is a great deal of cost involved in this type of testing and [it] is not completely covered by insurance. There is a tremendous strain, both emotionally and financially, on this young family.”
For more information and tickets, call Christina Smith at 734-8304, Karenann Volinski at 516-658-7247, Holly Cavalier at 553-5755 or Peggy Dickerson at 734-2619.