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Mom With Two Kids On Ventilators Blasts LIPA

St. James resident said response time was lacking and changes need to be made.

There is no fear more terrifying for a mother than the thought of her children being in a medical crisis - and without power.

For St. James resident Lori Burke, who has two children, Mary Ellen, 25, and Kevin, 24, both with micro syndrome, a rare genetic disorder and neuromuscular disease that requires that they be on ventilators at all times, that nightmare became reality after Hurricane Sandy.

When the Burkes, like so many others, lost power after Superstorm Sandy, the situation became critical.

The Burkes were without power for six days. Once another media outlet wrote a story about their ordeal, she said, "The power was back on in minutes."

Next, Burke said, the family lost power again after the nor'easter that blanketed Long Island on Wednesday.

But, when she called the Long Island Power Authority to report the second outage, Burke said she was told her family that they were "on the bottom of the list, after all the Sandy people."

Her children, Burke said, "are dependent on the ventilator to live."

And, while the family does have a propane generator -- which costs $150 per day to fill -- Burke said, since they are on LIPA's critical care list, the response should have been sooner.

"There's no such thing as the critical care list," she said. "That's the bottom line. From where I live, I can see the lights in the mall go on after two days, while we're out for so many days, and that's annoying. It's very frustrating."

Multiple attempts by Patch to reach LIPA were not returned.

Making the situation even worse, Burke said, LIPA representatives weren't even kind, telling her that her family's home was at the bottom of a list 619,000 people long -- with power not expected to be turned on for a week.

"Things like that make you crazy," she said, adding that her children cannot go to a shelter or hospital because they invariably end up becoming even more sick there. "It's frustrating when people don't realize the big picture," she said, adding that at home, her children have a room that's medically set up to meet their needs, with ventilators, oxygen, and other medical equipment.

"Even if you're on the critical care list, all you get is a phone call that the storm is coming."

Ventilators, she said, are necessary to her children's survival. And, even though the ventilators have a seven-hour battery backup, "When that runs out, then what?"

Her son Kevin, she said, has been on the ventilator since he was 11; Mary Ellen just began needing the ventilator full-time last year. Until that point, both her children attended school. But now, she said, their lives revolve completely around their St. James home.

"They're very comfortable here," she said.

Burke, whose husband Kevin is a police officer, said while she didn't feel fear during the power outage, knowing that before the situation degraded, she and her husband would help them and get them to safety.

"But I'm frustrated and angry," she said. "Society is supposed to take care of those who can't take care of themselves. And so many of us are tucked away in these communities nobody knows about."

Many others, Burke said, "are worse off than us." Some, she said, do not have the financial means for a generator or propane. One little boy in Brentwood on a ventilator had his battery backup go out, and an emergency services truck was needed to power the ventilator until help arrived. 

"It's bad enough, when your child is on a ventilator, just on a regular day. This is not right," she said.

Although the Burke family had their power restored Friday, she said awareness still needs to be raised -- and LIPA, held accountable.  "Things," she said, "definitely need to change."

Cindy Halpern November 09, 2012 at 09:44 PM
You are a nice person, CMarie. I bet you are a wonderful mother.
AH11767 November 09, 2012 at 10:08 PM
There are too many stories like this. When will LIPA recognize that families like The Burke's need to be considered critical when prioritizing restorations. For the vast majority, losing power is a major inconvenience. For those whose life depends on it, NO BRAINER! Get with it LIPA!
HeyJoe November 10, 2012 at 05:52 AM
LIPA needs to go. it is beyond salvaging.
Marion Knott November 10, 2012 at 03:52 PM
This is a good lesson for all those people who griped on the Patch about their lack of power dissing LIPA. In this case there was cause for this mom. I didn't see her using the Patch to state her case. The last of the kids got their power a day ago. They never dissed LIPA knowing that all around them work was going on. It was a good lesson for the kids to know what life is like without power. Of course LIPA should have put the Burkes at the top of the list. Maybe they will meet and discuss all that was wrong and all that was right. They meaning LIPA.
Cindy Halpern November 10, 2012 at 04:06 PM
I had two brothers who had Muscular Dystrophy. My parents had to be advocates for them. You can't be silent about what your children need. I have no doubt work was going on. I am not complaining about the workers. They are working hard. It is the LIPA administrators who are not out battling the cold. They are sitting in a warm office. And they didn't prepare well. So Marion, please think before you disagree. Any young child should not be exposed to this anyhow. And especially not disabled children.

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