Family battles rare seizure syndrome together.
Meet the McGurk Family
Beaver Falls, Pa.
Dravet syndrome, a rare and catastrophic form of epilepsy, has an incidence rate of one in 16,000 infants in the U.S. This makes it all the more devastating that the McGurk family has two daughters diagnosed with this unusual genetic mutation.
Fifteen-year-old Leah and her 12-year-old sister, Olivia, need around-the-clock care, mom Danielle explains, to keep the girls safe, to administer medications and to watch for seizures that could prove fatal.
“For Leah, it began as uncontrollable grand mal seizures that led to her being in a coma for 40 days,” Danielle says. “She was just 4-years-old.”
Danielle adds, “Olivia had a series of seizures as a 2-year-old that led to such brain damage that she’s never been the same.”
The McGurk family “relies on all the services we can get,” Danielle says. From in-home therapies, to supports in school, to nurses five nights a week, the family is able to function because of waivers each girl has to cover supports and medical assistance.
“Financially and emotionally, we hit rock bottom,” father Joe says of the early days of dealing with Leah’s needs. “We didn’t know anything about financial assistance, nurses, help with care. And the coma led to us racking up $500,000 in medical bills.”
The McGurks slowly became experts in the benefits provided by Pennsylvania’s Department of Human Services – how to get oxygen, special needs wheelchairs and medications – and have become advocates for other families. “Whenever we’re in the hospital,” Danielle says, “I seek out the people who look desperate – like they don’t know whether they’re coming or going – and I tell them what we’ve learned. People appreciate any help they can get.
“The waiver program is a matter of life or death,” Danielle says, explaining that the care they receive often isn’t covered by private insurance. “It’s not a want, it’s a need. It’s not a luxury, but a necessity. Special needs kids have huge medical demands. That’s what the waiver program is here for.”
Adds Joe: “This isn’t the life we planned, but we want to do whatever we can for our family. Today, Olivia graduated from elementary school, so I’m emotional. We don’t know what’s in store for the future, but we know we’ll tackle it together.”