Deputy Mayor Robert Zimmerman presented a proclamation to Anthony Mirigliani that recognized Sept. 18 as International Pitt Hopkins Syndrome Day in the township.
“We do the proclamation every year on Sept. 18,” said Zimmerman. “We follow suit with the worldwide recognition day, and we’ve been doing it for a while now.”
Pitt Hopkins Syndrome is a genetic chromosomal that can cause epilepsy, delayed development, vision problems, issues with breathing and intellectual disabilities. Symptoms that first show up in childhood include an abnormally large mouth; deep-set eyes; and a marked nasal root, among others, and they become more pronounced as a victim ages.
Physical, speech and feeding therapies can help ease some symptoms, glasses can counteract vision problems and medication can help with epilepsy. But there is currently no cure for the extremely rare disorder, which affects anywhere between 1 in 34,000 and 1 in 41,000 people, according to the Pitt Hopkins Research Foundation.
“I had no idea about the disease prior to Anthony’s diagnosis,” said Zimmerman. “If you ask around Mantua, most people will not know about it.”
To both help her son, Anthony’s mother Claudette has held fundraisers and educated people about her son’s condition, all while partnering with the township to raise awareness of Pitt Hopkins Syndrome.
“Every year, the mother reaches out to me, and they do some type of fundraiser,” Zimmerman noted. “I’ve known the Mirigliani family for over 30 years and I’ve helped them since Anthony was diagnosed. I give credit to the family for being very open about it. They’ve helped educate us about it and we’re thrilled about helping. They’re coming up with new and innovative ways to raise awareness for it.
“Anthony is like a local hero here in Mantua.”
Past fundraisers have successfully familiarized the community with the disorder, raising awareness and money for research.
“We’ll continue with this for as long as the family wants to continue it,” Zimmerman promised. “We’re proud to be a part of the family and we’ll continue our efforts in the future.”