'Do it for Drew' fundraiser to help family of special needs boy

There was no indication during Kathy Johnson’s pregnancy that anything was wrong with her baby, but on the day he was born, doctors discovered Andrew had a cleft palate.

“That wasn’t even the larger problem. That was a glitch on the radar,” said Jeremy Johnson, Andrew’s father. “He has an abundant amount of health issues.”

Shortly after he was born, Andrew began having seizures and was diagnosed with necrotizing enterocolitis, an intestinal disease common among premature babies, although he was full-term.

“He had perforations in his intestines and was going to the bathroom inside his body,” Jeremy said. “They removed about 85 percent of his large intestine.”

Although he recovered, Andrew suffered additional stomach issues over time, continued to have seizures and developed brittle bone disease as a result of his medication.

“He’s been diagnosed with cerebral palsy, but it’s just an umbrella term,” Jeremy said.

Andrew is now 6, although cognitively he’s only about 6 months old. He cannot talk or walk and is wheelchair-bound.

Despite his many challenges, Andrew is a happy child who smiles, has an intoxicating laugh and loves animals, his parents said.

“He loves sensory stuff, feeling things,” Kathy said. “He also loves startling noises like balloons popping and firecrackers.”

Sadly, Andrew is starting to laugh and play less as time goes on, Jeremy said.

Because he is nonverbal, Andrew’s parents have to look for other signs of distress or that something is wrong.

“Mom has a very good intuition. She has another sense when it comes to him,” Jeremy said.

“It’s really small things that start to happen with him,” Kathy said. “It could be as simple as he’s taking an extra nap today.”

Since January, Andrew has spent about two months at Children’s Hospital of Wisconsin as a result of aspiration pneumonia, pancreatitis, two broken femurs, seven compression fractures and, most recently, an infection that drastically lowered his heart rate and caused him to be placed on oxygen.

A Do it for Drew GoFundMe account has been established for the Johnsons to buy a reliable van to take Andrew to and from the hospital, and to offset the cost of hospital stays.

Jeremy, a carpenter, also is building a ramp to get Andrew in and out of the house more easily. Although the family lives in Twin Lakes, Wis., Jeremy grew up in Antioch and Kathy grew up in Lake Villa.

Given their local ties, a charity Jazzercise class will take place June 3 at the Lindenhurst Park District.

A benefit also is scheduled for June 12 at Anastasia’s Restaurant & Sports Lounge in Antioch.

“I know the family from them coming in,” said Gina Giannakakis, one of the owners of Anastasia’s. “The community has been great to us and we like to help give back. It should be a big event. Hopefully they raise a lot of money for little Drew.”

Anna Soria, owner of the Lindenhurst Park District’s Jazzercise program, said Andrew’s aunt, Carey Denzel, is one of her instructors and proposed the fundraiser.

“I said absolutely. It’s such an unbelievably sad story,” Soria said. “I’m hoping we get 100 people signed up.”

“It’s very heartwarming. The support has been unbelievable,” said Kathy, who has her hands full as Andrew’s primary caregiver while also caring for their 8-year-old daughter, Madeline.

“She puts up with a lot. Mom’s always at the hospital,” Kathy said. “But she’s a really strong kid and very empathetic.”

Madeline has a strong bond with her brother, Jeremy said.

“She loves him very much. He’s made her a better person, more insightful. When she sees other kids who are disabled, she understands their struggles.”

Although Andrew will need lifelong care, and there is no way of knowing how long he will live, “He has always been a blessing to us,” Jeremy said.