As the saying goes, it takes a village to raise a child. Yet, for families with children battling illnesses, that phrase has a special meaning.
For example, look no further than the parents of Justine Jao, who from an early age suffered from uncontrollable seizures, or epilepsy.
“Being first-time parents, we didn’t know what we needed,” her dad said. “Now that we were parents of a child with special needs, we were overwhelmed with the amount of information we needed to know.”
Accessing quality healthcare
Getting Justine the medical care she needed was her parents’ highest priority. Her dad explained that, after her birth, Justine was transferred to Lurie Children’s Hospital of Chicago, where doctors diagnosed her early on with the genetic disorder KCNQ2 encephalopathy. In Justine’s case, doctors knew exactly what medications to prescribe in order to manage her rare diagnosis.
“Having such a knowledgeable medical team eased our minds, knowing that Justine was in good hands,” her dad said.
Justine’s dad noted the hospital staff also offered them information on how to tend to Justine’s health after her hospital stay.
“With a full staff of therapists — occupational therapy, physical therapy, feeding, and more — they told us what we should expect with early intervention and how to navigate that system,” he said.
Finding financial assistance
The next question for the Jao family was how they’d pay for all this care. Indeed, having a child with special needs can take a significant financial toll — one systematic review, published in September 2015 in Epilepsia, found that estimated epilepsy-specific costs ranged from $1,022 to $19,749 per person, per year. Because children with epilepsy often have additional health problems, total healthcare costs for these people can be even higher, ranging from $10,192 to $47,862.
Justine’s mother’s insurance helped cut the family’s out-of-pocket costs — particularly for the 47 days Justine spent in the NICU, along with her medications and follow-up visits. Her father’s company was also supportive of the cause, helping collect money to cover Justine’s medical bills.
“At that time, there was no paternity leave at my company,” he said, “but I worked with HR to start my short-term disability benefits to ensure that I would have a job to come back to.”
Leveraging community support
Some of the most beneficial support the Jao family received came from a nonprofit with resources available globally, Ronald McDonald House Charities, which helped the family pay for lodging and food — reducing their one- to two-hour travel time home, and alleviating the mental tax of planning meals.
“Knowing that we were only a few blocks away from Justine at any moment gave us the chance to step away from all of the medical terminology and beeping monitors,” her dad said, “and just gave ourselves the mental-health breaks we so desperately needed.”
Melinda Carter, [email protected]