WATCH: Massapequa Dad Raises Awareness Of His Daughter's Rare Illness
MASSAPEQUA, NY — A Massapequa man is raising awareness about his daughter’s rare illness. Anthony DiChiara recently walked 100 miles to bring an understanding to Emmanuel Syndrome, his nine-year-old suffers from, and how the family cares for her.
“It’s tough because my wife and I both work full time,” DiChiara told Patch.
There have been only approximately 500 cases reported of Emmanuel Syndrome.
Find out what's happening in Massapequawith free, real-time updates from Patch.
Although his daughter Penelope doesn’t have the congenital defects associated with the syndrome, she is non-verbal and non-ambulatory and has intensive physical therapy weekly.
“Our goal is to get her walking independently because it will open a lot of doors for her,” he said.
Find out what's happening in Massapequawith free, real-time updates from Patch.
The main reason DiChiara did the walk is to highlight the lack of after-school programs for children with disabilities.
“Prior to the pandemic they were few and far between,” he said. “Post-pandemic, they were virtually non-existent. Any of the ones that do exist, they can’t accommodate her needs or are not appropriate for her age.”
Watch the full “Patch Weekly Spotlight” interview with DiChiara below.
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