CLEARFIELD – Seeking medical care for a sick child can be frightening enough. Now imagine your child is sick enough to need transport to another hospital almost three hours away from home.
Liz Davis, director of the Emergency Department at Penn Highlands Clearfield, together with Julie Daquilante, newly-hired director of food and nutrition at Penn Highlands Clearfield, are working to provide “Jaxson Bags” to parents whose children experience medical emergencies that require them to be transferred to Children’s Hospital in Pittsburgh.
The bags provide essential items that many parents may not have with them at the time their child has to be transferred.
Davis and Daquilante came up with the idea of the “Jaxson Bags” when Davis’ son Jaxson had to be transferred to Children’s Hospital following what should have been a routine procedure.
According to Davis, Jaxon, who will turn seven this spring, was born with a condition known as Pachgyria. According to sciencedirect.com, Pachgyria is a rare developmental disorder which causes abnormal development in the brain tissue and effects the function of the neurons in the brain.
Signs and symptoms of pachygyria vary among patients and can depend on the extent of the abnormality. They often include poor muscle tone and motor function; seizures; developmental delays; intellectual disability; failure to grow and thrive; difficulties with feeding or swallowing; swelling in the extremities; and small head size (microcephaly).
“When he was born, we didn’t know anything was wrong,” Davis said. “It wasn’t until he was about nine months old that we noticed he wasn’t hitting his developmental milestones.”
Davis said Jaxson has some vision impairment. He can make vocalizations, but he is unable to form words. She said his legs are different lengths, but he is able to walk.
“He’s a spitfire,” Davis said. “He recently learned to jump and can get both feet off the ground at the same time. He’s very excited about that. He doesn’t know he’s different. If he could play football, he would. You can’t turn your back on him for a second or he’s gone.”
Davis said Jaxson is in a multi-disability class at school and is thriving. She said the soon-to-be seven-year-old rarely gets sick, but when he does, it can be hard.
Davis said recently, Jaxson was a patient at Penn Highlands Clearfield to have a gastrostomy tube placed and developed an infection, which caused him to be flown to Children’s Hospital in Pittsburgh.
“It happened so quickly. It was so unexpected. Suddenly I’m getting in a helicopter and all I had with me was my purse,” Davis said. “I didn’t have my cellphone charger, I didn’t have a comb for my hair, I didn’t even have anything to wash my face.”
Luckily, Davis was able to receive help from Daquilante, who had been previously employed with Children’s Hospital. Daquilante was able to help Davis get supplies, food vouchers for the cafeteria and other items she needed.
When Davis returned home, she and Daquilante began talking about what they can do to help other parents who are in a similar situation.
“A lot of these parents don’t have much,” Daquilante said. “Suddenly their child is being sent to Pittsburgh and it’s overwhelming. They don’t even have a toothbrush, or anything to eat. They’re in this big city and they don’t know what to do.”
Daquilante and Davis began collecting items to give to parents who find themselves making an unexpected trip to Children’s Hospital. She said the bags include food vouchers, a cup, personal hygiene items, like toothbrushes and toothpaste, snacks, drinks a notebook and writing utensil, soup, coffee, hot chocolate, baby food and other items that don’t seem like much until you don’t have them.
Daquilante said in the four months since she and Davis started their project, they have provided 42 “Jaxson Bags” to patients whose child is being transported.
“We may not be able to take care of their child’s needs at Penn Highlands Clearfield, but we want them to know that we’re still thinking about them and we want to help however we can,” Daquilante said.
She said the hospital is collecting items to be used in the bags in the emergency department. Daquilante said there is a particular need for small throw-blankets, but they will take any items.
She said items such as toothbrushes, combs, hair brushes, non-perishable snacks, personal hygiene items such as hand and face wipes, cell phone chargers, $15 and $20 gift cards for gas, anything which might help a parent who has to suddenly leave home without being able to “pack” for the trip.
“We’re doing a good thing and we’re hoping to expand to all the Penn Highlands Hospitals,” Daquilante said.
“These bags are not just a great idea, but they’re another example of our staff showing how much they care about their patients and the communities they serve,” Rhonda Halstead, president of Penn Highlands Clearfield, said. “I appreciate that Julie and Liz have gone out of their way to make this idea a reality and to help others.”
Donations can be made care of the Emergency Department at Penn Highlands Clearfield.