WADSWORTH, Ohio – Jackie Smolinski says most of her days are filled with smiles, but lately things have been tough.
Her son, Luke, suffers from 16 different health problems, including a mitochondrial disorder and severe seizures. As of late, the six-year-old child’s condition has worsened – and so has the help.
“I mean, he’s six and it’s not been a very easy six years,” Jackie said. “Constant health issues and hospital stays. We’re always at the hospital. Just last week we had 12 appointments in four days between all three of my children.”
“We refer to him as an undiagnosed child,” she continued. “He doesn’t have one overlying condition, just a lot of different complicated issues.”
The State of Ohio has reduced funding to the Medicaid program the family depends on every day. The program pays for a nurse to help Jackie and her husband, Steve, a few hours a day. The nurse tends to Luke’s needs while the full-time mom takes care of her other children, Lily, 5, and Alex, 8.
“We get by,” Jackie said. “The services that we did have were few and, you know, when the cuts came, it was just tragic to our family.”
The nurse helped provide balance in the family. Jackie said if she had to take Lily or Alex to an event, the nurse could tend to Luke. With the nurse, Jackie can take a shower during the day. Without the help, her every move is needed to watch her middle child. The nurse helped the family give their other children as much balance as possible.
Jackie said the nurse is also trained to help with Luke’s specific health needs, which can be fatal.
“They don’t look at all like a seizure,” she said. It looks like he’s going to sleep. His body temperature drops. His heart rate drops. Every time this happens, we just hope and pray that he`s going to wake back up from one of these events. There`s not a lot, there`s no treatment.”
A FIGHT FOR HELP
To help ensure Luke’s well-being, Jackie said she’s decided to fight the state for help. The state’s Medicaid program reaches out to low-income families, and hers is not eligible. On Wednesday, she will meet a judge who will decide her son’s fate with the program.
Jackie worries, however, that without legal help, she will not win her case. Counsel will cost her at least $5,000, and her family does not have the money.
“There are so many things that Lucas needs,” she said. “You know, to take that money and spend it on a lawyer, it would be detrimental to his other needs.”
LEMONADE FOR LUKE
Lynette Francis figured when life hands you lemons, why not make lemonade?
Having known Jackie for about a year, Lynette decided to put together a benefit Lemonade for Luke, where she will transform her front yard into a lemonade stand.
“I’m super, super happy and excited, cause I know how much she goes through and how much she needs it,” Lynette said.
After taking the story to social media, interest in the event exploded. Hundreds of people have liked and commented on the event page Lemonade for Luke. Much to Lynette’s surprise, Cleveland Browns defensive lineman Phil Taylor and wide receiver Travis Benjamin, also extended support by retweeting the event.
“I just never ever thought it would get this big,” Lynette said. “I honestly thought it would be just a handful of my friends.”
The lemonade stand will be open from 11 a.m. to 3 p.m. Sunday, July 21, at 633 Oakcrest Drive in Wadsworth.
Lynette said they’ll have some baked goods and T-shirts with one of Luke’s catch phrases, “Hey hey hey!”
The stand will accept cash or bags of Gerber Graduates Yogurt Melts for payment. Luke has strict dietary needs, but there are a few things he can eat. The family said Yogurt Melts are his favorite snack, but they spend nearly $200 a month purchasing them.
“He likes them,” Lynette said. “Luke is on a tube feed and this is one of the only foods that he will actually consume, so she goes through I think five packs a day.”
Lynette said they hope to raise enough money to cover the legal expenses for the family. If they do not meet the goal or if they go over it, the money will be used to “Luke proof” the house, as Jackie puts it. Luke is very mobile and living in an older house; they have to get custom items to help protect him.
Jackie said the experience has been overwhelming, but she’s grateful to have the support from the community.
“It takes a village to raise my family,” she said. “I couldn’t believe they got as far as they did, you know; businesses were willing to help, so you know, just thank you.”