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At the beginning of the process, Henderson contacted the office of City Councilwoman Joan Krajewski and was put in touch with aide Pat Costello. Unfortunately, although Henderson said Krajewski’s office was "wonderful in assisting," Costello basically told Henderson that the city couldn’t do much to help out since the playground was school district property.
During a brief phone interview, Costello acknowledged that the equipment on the playground was "donated years ago," but said it would be up to the district to remedy the situation.
Henderson said her involvement thus far has come in the form of contacting various businesses and organizations — one large one that she didn’t want to publicly identify — to see about donations.
"We don’t want to own it (the playground); we don’t want to be responsible for it," Henderson said of the extent of her foundation’s involvement, "but we want to make it safer for all children."
And Henderson wants the school district to rename the playground after her brother, whose dream was to become a Philadelphia police officer before his hopes were shattered upon learning of his disease at age 17.
Robert eventually ended up taking a job with the Philadelphia Gas Works, but his employers never learned of his ailment. Why?
Because when Robert was first diagnosed, "you never, ever said the word ‘epilepsy,’" Henderson explained. "The doctors said, ‘don’t tell a soul; he’ll be an outcast, and that’s it.’"
However unfortunate, companies, even to this day, continue to discriminate against people with epilepsy, Henderson said. The stigma is simply hard to shake.
But the disease itself is quite serious, and Henderson said many people are unaware of the dangers that go along with it. Her own brother died during a violent epileptic fit in which his neck was broken. Henderson, who has worked in the medical field for decades, said of her brother’s death that she "never saw anything like that in my life."
Henderson said many people are still unaware of just how problematic the disease is. In 2006, more people suffered seizure-related deaths than women who died from breast cancer, she said. And today, one in 100 people are estimated to be diagnosed with epilepsy or a seizure-type disorder.
"People are unaware of epilepsy," she said. "They have this one mindset. They don’t realize it can kill or create brain damage."
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Aside from her goal of revamping the playground, Henderson works to raise awareness about epilepsy in other ways.
The organization, which started out as a mere memorial foundation, now holds events such as fund-raising walks, the next one scheduled for Oct. 19, at 10 a.m., at Academy and Red Lion roads.
The foundation also presents awards and savings bonds to area students who have promoted epilepsy awareness.
While Henderson has since moved to the Far Northeast from her native Mayfair, she still has family near Lincoln, including young nieces and nephews who could benefit from an upgraded playground in the area.
"If they (school officials) want to keep people in the neighborhood, they have to have these types of things," she said of the importance of recreational outlets for children. "We’ve got to save this playground."
But it will take a commitment, particularly on the part of the city and the school district, to ensure that the playground helps to usher in new memories for younger generations.
"We are going to need support from the neighborhood all the way up to the city (and) to these big organizations," Henderson said. "It’s going to be baby steps, but we’re going to do it."
But much to Henderson’s dismay, her dream may not come to fruition. The reason: the playground may simply be turned into an overflow parking lot for the high school, its original intended use, according to school district spokeswoman Felecia Ward.
Ward said the district has determined that it does, in fact, own the piece of land in question. But it was originally supposed to be a parking lot, and it became a play space sometime over the years after the district agreed to accept play equipment funded by an anonymous donor.
The problem, she said, is that the district never agreed to maintain the equipment or the space, and when a need arose for upgrades, the district could not, and would not, agree to spend the funds needed for improvements.
And while Henderson said her organization would raise the necessary funds and only seeks approval from the district in order for her group to move forward and spruce up the lot, Ward said that it may be out of the question. The reason is that school district lawyers cautioned that it could lead to lawsuits if a child was injured while playing on the district-owned property.
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Now all that remains at the playground, or what Ward statexd community members refer to as the "weekend tot lot," are a couple of benches and picnic tables. The lot will remain padlocked until the district decides for sure what to do with it.
Henderson said she is disappointed, since she may have to start canceling previously scheduled meetings with companies that could have been potential funding partners.
As for Henderson’s desire to devote much of her life to epilepsy awareness, she admitted many were surprised at her decision, especially given that she is a survivor of breast cancer. But to her, it was a no-brainer.
"People said to me, ‘You had cancer; why aren’t you working on something for cancer?’" she said. "My whole thing is, everybody knows about cancer."
And even though Robert is gone, her brother continues to be an inspiration to Henderson.
"He’s a figurehead ... because we want other people with epilepsy to know ... that he still went on (living), and he succeeded," she said.
Robert lived with the disease for 26 years, managing to work, marry and raise children. Luckily, he only managed to suffer epileptic episodes at night.
"He was an example of, ‘You can do it,’" Henderson said. ••
Reporter Jon Campisi can be reached at 215-354-3038 or jcampisi@phillynews.com