Since 2012, the Mirigliani’s have been hosting fundraising events on their front lawn for the Pitt-Hopkins Research Foundation.
By Krystal Nurse
The Sun
Sewell resident Anthony Mirigliani was diagnosed with Pitt-Hopkins syndrome, a rare genetic disorder, nine years ago at the age of 5. For the past six years, his dad Frank, mom Claudette, and sisters Juliette and Lia, and brother Frankie have been raising money for a cure or treatment. This year, they hope their event will bring more awareness to it and what Anthony lives with.
“I started the first year on my lawn, and I rallied up the neighbors, and we had 200 people come out,” Claudette said. “We put a donation box outside, got lemonade, and we raised $2,888 just from people coming and sharing the awareness for Anthony.”
The Mirigliani family hosts their annual Pitt-Hopkins Syndrome Awareness Fundraiser every Sept. 18, rain or shine, on the lawn of their Sewell home. This year, they’re selling T-shirts that will help raise awareness year-round about the disorder.
According to the Pitt-Hopkins Research Foundation, Pitt-Hopkins syndrome affects nearly 800 people worldwide, and it targets the 18th chromosome. Symptoms can include developmental delays, episodic hyperventilation and recurrent seizures, among others. Anthony showed many of the symptoms, but a diagnosis wasn’t made until after his fifth birthday.
“At 4 years old, he was in school and with kids who are autistic, and we knew he didn’t have classic autistic mannerisms,” Claudette said. “It had to be something different.”
His family took him to a specialist at Children’s Hospital of Philadelphia where he went through blood tests. One came up positive for Pitt-Hopkins syndrome.
Claudette has since then been heavily involved with the Pitt-Hopkins Research Foundation by sitting on the board of directors and partaking in fundraising efforts herself for research toward treatments or a cure.
“We have our own mice that we were able to give Pitt-Hopkins to and be able to cure them of it,” Claudette said. “We have 10 drugs that we are going to trial in the mice by December. It took a long time to get to that point, and if there’s any hope, we’ll start with human trials within the next couple of years.”
All of which cannot be done without grassroots fundraising events to help support the cause. The Miriglianis receive donations in the form of T-shirts, water bottles, auctions and support from local businesses.
Anthony’s sister, Juliette, 10, helps their mom out by spreading the word on events, and by taking care of him herself, as he is nonverbal and has a few motor impairments.
“On my Snapchat story, I will snap a lot of things for Pitt-Hopkins just to spread the word about the event,” said Juliette. “My friend’s dad [Robert Fisicaro] is the superintendent [of Mantua Township Public Schools], so he’ll send emails and letters to the schools about it.”
Claudette and Juliette are often near Anthony to help him communicate using functional signs and his iPad, if it is something more complex than “mom,” “dad” and “bathroom.” They are also on hand while he’s eating and walking around to make sure he is safe.
Anthony receives care at The Child and Adolescent Psychiatric and Behavioral Sciences and the Autism Integrated Care Program at CHOP, as well as take prescribed medication to ease some of the characteristics of Pitt-Hopkins.
Now, at the age of 14, Anthony doesn’t let the genetic disorder stop him from living as normally as possible.
“He does a lot of sports in Mullica Hill with the TopSports program, which is like the Special Olympics,” said Claudette. “The school does a really good job with keeping him moving and involved with other children as much as he can be without interfering with their learning process.”
Claudette hopes “people walk away from the event with awareness, kindness, and acceptance for those who are different from them.”
The event will occur at 740 E. Atlantic Avenue in Sewell from 4:00 pm until 8:00 pm and everyone is asked to donate by ordering a T-shirt ahead of time, or participating in on-site raffles. To find out more information on the event, visit www.AwarenessForAnthony.MyEvent.com.
