Parish President proclaims Sept. 18 as Pitt Hopkins Syndrome Awareness Day in Ascension Parish
Ascension Parish President Tommy Martinez proclaimed Sept. 18, 2013 as Pitt Hopkins Syndrome Awareness Day in Ascension Parish. President Martinez read the proclamation aloud during the Aug. 15 parish council meeting in Gonzales.
Pitt Hopkins Syndrome is a severe neurological disorder caused by a loss of function that affects a person's chromosome 18. It is characterized by developmental delays, moderate to severe intellectual disability, breathing difficulties, recurrent seizures, gastrointestinal issues and distinctive facial features.
Pitt Hopkins Syndrome was discovered in 1978 and currently there are 250 known cases worldwide with 40 in the United States.
Three-year-old Ascension Parish resident Carson Enlow is the only known person with Pitt Hopkins Syndrome in Louisiana, said Carol Vallee, Carson's grandmother.
"Families with these children face a lifetime of medical visits and assorted therapies to improve their quality of life," Vallee said. "I'm proud to announce that Pitt Hopkins organizations have dedicated the upcoming Sept. 18, named for the 18th chromosome, as the First Annual International Day of Recognition for Pitt Hopkins Syndrome."
Mike Enlow, Carson's father, said his family is raising funding for research of Pitt Hopkins Syndrome by selling t-shirts with a design of Carson on the back. For more information about the t-shirts, you may email firstname.lastname@example.org or call (225) 247-2471.
For more information about Pitt Hopkins Syndrome, visit www.pitthopkins.org.