Emma’s Fun Day in PA
Dover Township family raises funds for rare genetic disorder
Daily Record/Sunday News
York, PA -The family of a 2-year-old girl with a rare genetic disorder is holding a fundraiser Saturday in Dover Township to benefit research on the syndrome.Emma’s Fun Day is named for 2-year-old Emma Dull, who was diagnosed last year with Pitt Hopkins syndrome, according to her mom, Stacey Dull. Emma started receiving therapy and undergoing tests when she wasn’t hitting some milestones as a baby.Eventually, tests revealed that she had Pitt Hopkins, a syndrome characterized by a missing gene on her 18th chromosome.Dull said only 250 people in the world have been diagnosed with the disorder. Parents formed the Pitt Hopkins Research Foundation several years ago to fund research.Pitt Hopkins causes developmental delays, Dull said. Children also can suffer from seizures, breathing apnea, and gastrointestinal problems.”It’s hard to explain how it works,” Dull said. “Their brain may know things, but it doesn’t communicate with their body on how to do things.”Children with Pitt Hopkins don’t really talk, she said. Emma says a few words, including “mom.”
At her last evaluation, Emma was at about the level of a 12-month-old. She goes through various kinds of therapy each day.
Emma hasn’t crawled and scoots to get around. She just started pulling herself up on things, her mom said, so she’s hopeful walking will come next.
Dull said those working to fund research hope there will one day be medicine to counteract the effects of Pitt Hopkins.
“I’d do anything I could for my daughter,” Dull said. Saturday’s event is the family’s second fundraiser. A sandwich sale in April raised a little more than $1,000.
Dull said that kids with Pitt Hopkins are said to be extremely happy, and that’s true with Emma.
“You never can catch her without a smile on her face,” she said.
@angiemason1; 771-2048
If you go
What: Emma’s Fun Day will include activities, games and crafts for kids, door prizes, food and more.
Why: The event will raise money for the Pitt Hopkins Research Foundation. Attendees can purchase tickets for the various activities.
When: 11 a.m. to 4 p.m. Saturday
Where: Brookside Park, 4054 Fox Run Road, Dover Township
http://www.ydr.com/local/ci_23739102/dover-township-family-raises-funds-rare-genetic-disorder
