“We have to plan ahead. We turn on the car so we can turn the AC on to let it run for a while, then rush him out of the house and into the car. When we pull up in front of a store, doctors office, etc., we rush him in and then make sure we go back out to the car to turn the AC on before we put him back in the car,” the Tottenville resident said, explaning the extreme measures they must go through to ensure John stays cool.
HIGH COST OF KEEPING COOL
Dilgen said they have to run the air conditioner nine months out of the year in order to prevent John from sweating. John’s bedroom – or whatever room he is in — is kept at 60 degrees in addition to having two fans running.
In 2014, the Dilgen’s Con Edison bill was $1,500 just for the month of August.
“Rare diseases have so many hidden costs that most people wouldn’t think about,” said Dilgen, noting that her house is an old Victorian so it’s not as “up-to-date in weather-proofing” as some newer houses.
Audrey Casso has been a friend of the Dilgen’s for almost a decade.
“When you see what they go through on a daily basis, it will make everything in your life seem miniscule,” Casso said. “You just want to do anything you can to help them.”
Casso recently started working at Amergy Solar, a New Jersey-based firm with an office in Eltingville, as a sales representative. In her new position, she saw other people saving thousands of dollars by switching to solar energy and presented the idea to Dilgen.
Dilgen was immediately interested in having solar panels installed, but was worried about the large tree in the backyard, whose branches covered a large portion of the roof.
“I went into my work meeting the next morning and told my boss Bill Wang — who is also the owner — the Dilgen’s situation and without hesitation he said ‘We’ll do it for free,'” Casso said.
“I believe in giving back,” Wang told Casso.
The tree removal company got on board as well, waving the cost for their services.
That’s when Audrey was able to present the Dilgen’s with the check.
“She’s a great friend, so selfless. … this was all her idea. I’d never thought of it [solar energy] before,” Dilgen said.
The money the family will save can now be used for trips to the Cincinnati Children’s Hospital in Ohio, where John has to go every few months to see specialists.
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