Run For HC Headed To Manayunk

Chase Leposki was a miracle baby.

Even though he is on the Autism spectrum, suffers from seizures, cannot regulate his body temperatures, is legally blind, eats through a feeding tube and cannot speak or walk, he is defying the odds. Doctors said he would not be able to stand or crawl and the 7-year-old is doing both.

"We don't know how he is doing what he's doing," his mother Ali said.

Chase has Hydrocephalus which essentially means "water on the brain." The fluid did not give his brain room to develop and, even though doctors suggested that she terminate the pregnancy, the Roxborough resident knew that wasn't an option. 

When Chase was born his head was 54-inches.

"It was awkward in the beginning, we didn't know how to hold him and couldn't find clothes to fit him," his mother said, adding that it was difficult for her youngest to bond with her because he did not like being held as an infant.

Chase has already had 15 surgeries to drain water in his brain and spent one entire summer in the hospital when he was three.

The youngster requires round-the-clock care that is becoming difficult for the family to provide.

He goes to school at the Easter Seals and works with a theraputic support staff aide, a behavioral specalist and a home health aide as well as an overnight nurse who makes sure he can't get out of a specialized bed.

To make room for their son's specialized bed, Ali and her husband Steve have been sleeping in an unfinished basement for more than a year. 

Her son's fragile state, she said, is something that she doesn't allow herself to dwell on.

"Any seizure could kill him," she said. "If I thought about it, I'd go crazy. This just becomes our normal."

In an attempt to make the families "normal" a little easier, the 7th annual Hydrocephalus Awareness Run/Walk is being held on Main Street Sunday and funds from the event may go toward outfitting the family's basement as a safe place for Chase.

The Leposki's have participated in previous years and set up a team for Chase this year. Click here to donate to the family's team.

"The awareness walk is to show the community that there are people living with his right in their neighborhoods and they don't even know about it," Marybeth Godlewski, who is part of HEAR-US, a nonprofit dedicated to spreading awareness about the disease and the mother of a 15-year-old with Hc, said. "They say it takes a village, and it takes a village to get through something like this."

The run will kick off at 9 a.m. followed by the 1 mile fun walk at 9:10 a.m. outside Mad River on Main Street and an awards ceremony will be held at 10 a.m. with guest speakers including state Rep. Pam DeLissio, D-194, and Councilman Curtis Jones.

And this is the month to do to, Godlewski said, because November is the state's official Hydrocephalus awareness month.

The problem, Ali says, is that her family never seems to fit the requirements for services. They either make too much money, don't have enough money for programs or programs don't accept her son.

"We've been begging for help for years," she said, adding that she had to leave her job to care for her son and now, if she were to get another job, the family would make too much and Chase could lose his medical benefits.

But, although it's a struggle and the family can't really travel, they still have fun.

"Every night after dinner we have ping pong tournaments on our dining room table," she said. "The kids don't have a lot but we still have fun, maybe not in the traditional way."

This weekend's run, Godlewski said, is an attempt to highlight families with hidden struggles.

"These kids have had to fight for everything," she said of Chase and her teenage daughter. "We want to bring this to people's attention."

For more information about the event, click here.