Aug. 21, 2017, was a hectic and very special day for Dani and Rob Maxwell.

The Maxwells had two children at the time: Sierra and Ethan. It was Sierra’s first day of school and also happened to be the day of the Great American Eclipse.

Neither event ended up being the most significant thing to happen to the family on that Monday.

At 2:37 p.m. a warrior was born. Their family grew to five as Lance Maxwell entered the world.

Fast-forward to 2020, and Dani, a Tamaqua native, and husband Rob, now have a 17-year-old biological daughter, Sierra, and two adopted sons: Ethan, 5, and Lance, 3.

Siblings

Before Lance was born in 2017, the Maxwells prepared for months to adopt Ethan’s biological sister. But on the day she was born, the birth mother changed her mind.

“We were devastated,” Dani said. “We took some time off work; I had stopped working. … We moved, we bought new vehicles, because with three kids we needed more bedrooms and all of that stuff. A friend called me to get me out of the house, who works with the homeless in downtown Harrisburg. I started volunteering.”

After selflessly spending time at the shelter, a homeless woman battling both mental illness and drug addiction made a connection with Dani.

The woman, Lance’s biological mother, approached Dani and wanted to know that her future child would be in good hands.

She asked Dani and Rob to adopt her unborn baby.

Dani and Rob went to a doctor appointment with the birth mother and they were informed she had a severe placental abruption. She needed an emergency C-section.

A short time later, just before the solar eclipse, Lance was born very prematurely at 1 pound, 12 ounces.

“I had never seen a baby so small in my whole life,” Dani said. “I said to Dr. Wolf, ‘Will he live?’ He said, ‘Sure, he’s just tiny!’?”

They used that saying for everything from that moment on.

Fight or flight

Dani and Rob stayed at UPMC Pinnacle in Harrisburg with Lance for five days after he was born.

On that Saturday, Lance had a bowel perforation and had to be flown to Hershey. Just before surgery, Dani was finally able to hold Lance for the first time.

Lance lost 2 centimeters of bowel, but did great health-wise for the entire month of September. The Maxwells were at the hospital 16 hours a day, seven days a week.

On Oct. 1, their world crashed.

“We got a call in the middle of the night; he was on nasal cannula oxygen and was doing fantastic,” Dani said. We felt that he would be home before Halloween because he had done so well. But they said he had a bloody stool … they called back and said his oxygen levels dropped and he was re-intubated and was on life support.

“We immediately went back over and they believed that he had necrotizing enterocolitis of the bowel, which is basically flesh-eating bacteria of your bowel.”

Only about 1% of children have the extremely rare disease, and roughly 12% of them live past the first 72 hours.

Lance battled through those three days.

“It wasn’t getting better or worse, but they couldn’t confirm that it was necrotizing enterocolitis,” Dani said. “We went for nuclear studies. We went for everything.”

Lance had about 500 sticks for blood since his birth. Other countless procedures included X-rays and ultrasounds, which sometimes totaled 10 each day.

On Oct. 16, with Lance not even 2 months old, Rob pulled the team of doctors together. The Maxwells considered flying him to Boston’s Children’s Hospital, but there were serious concerns about him surviving the flight.

“I don’t care what you need to do, but you have enough brains in this room to figure it out, and if you don’t feel like you do, we’re flying him to Boston. I’m just asking you to not let our child die,” Rob said.

Lance went into surgery that day in Pennsylvania. It turned out that he did in fact have necrotizing enterocolitis.

The clump of bowel that had it was hidden behind normal bowel and suctioned to the bowel wall - it perforated again. Had it not suctioned, according to Dani, Lance would have died immediately.

“We just happened to do surgery at the right time,” Dani said. “They fixed him up, but he didn’t get better.”

Three days later, Lance needed another surgery.

His condition was not improving, and he had lost 22 centimeters of bowel to date. Another 5 were taken in surgery.

He swelled up with fluid and had a full wound across his stomach. But Lance’s resilience and perseverance is second-to-none, and circumstances started to trend in the right direction after the procedure.

“They told us that we could hope for Lance to go home in January of the new year and maybe his ostomy would get reversed. In fact, Lance got better so fast, we went home the day before Thanksgiving.”

Another challenge

In 2019, Dani was certain that Lance was not progressing normally.

“Having other kids, and having been a therapist in the past, I knew there was something more. I scheduled with neurology at Hershey. I told the doctor I don’t want you to be afraid to tell me what it is.

“He picked Lance up and worked with him for a few minutes and said that he has cerebral palsy; which is a bucket diagnosis for any head or brain injury that occurs before age 2. He probably lacked oxygen with the placental abruption and when he had the infection.”

Lance, who just turned 3 this past August, is doing fantastic physically. However, Lance does not talk.

“He makes a lot of sounds and is really excited and happy, but he does not speak words. He understands everything you tell him; he just can’t make his needs known,” Dani said.

In January, after about a year of research, the Maxwells decided to get Lance stem cell transfers.

“Before the stem cells, you could sit him up, but he would tip over and he would fall … he didn’t crawl or do any of those things. We got the stem cells on Jan. 16, and within two weeks, his physical therapists had him sitting up, unsupported. He doesn’t fall over anymore. His change was really fast.

“Now, we are to the point where Lance can be sitting, he transitions down to his belly and crawls - pulling with his arms, and he can push himself back up to sitting. None of his therapists have ever seen a child with cerebral palsy be able to do that. He is so determined to do what he wants to do. He has overcome everything that they said he would never do already.”

Lance recently got a walking device that goes behind him and he is learning to use his steps.

“We also made him a wheelie chair … he can go wherever, whenever he wants to in his chair in the house. As soon as we put him in it and he realized he could go, he was gone! He is amazing.

“People will say that he’s so lucky. But we’re the lucky ones. Lance has taught us more in the last three years then we will ever teach him in his lifetime. He is so inspiring, that’s why we are so willing to share his story. They said he would never, talk, walk or roll over.”