EASTON, Maine — It was only when they had arrived home, after a long drive from Eastern Maine Medical Center in Bangor to their residence in Easton, that parents Pete and Kristina Lento faced what they had spent nearly two weeks trying to barricade from their minds.
“We got the car unpacked and got her all settled,” Pete Lento said Friday, speaking about his daughter, Paige. “Kristina and I were relaxing a bit and we both really acknowledged right then how close we had come to losing her.”
It has been a rough December for the Lento family, which includes 7-year-old Paige and 5-year-old Chloe. Paige was born with Jeune syndrome, a rare genetic disorder that affects the way a child’s cartilage and bones develop.
Common signs and symptoms include a small chest and short ribs which restrict the growth and expansion of the lungs, often causing life-threatening complications, according to information from the National Institutes of Health.
Besides breathing and lung issues, children can develop life-threatening kidney problems. Patients can be treated, but they cannot be cured.
Paige has suffered from a number of those complications, but has managed to beat them each time, Pete Lento said in a recent interview. It was a different story, however, around the second week in December when her health worsened quickly.
“She had been suffering with a cold, so we took her to the doctor,” he said. “And our daughter is tough. Throughout all of her hospitalizations and procedures, she’s just remained constantly upbeat and ready to face it down. But during that appointment, we heard her tell the doctor that she was sick. And we knew then that it was bad. She rarely acknowledges not feeling well.”
Paige was admitted to The Aroostook Medical Center in Presque Isle with pneumonia and “immediately began shutting down,” said Lento.
“They put her on a ventilator and took her by ambulance to EMMC,” he said. “And then problems with her kidneys just popped up. The doctors kept telling us that they were optimistic, so we wanted to be as well. And all the while that was going on, Paige was conscious. She was lying in a bed with a tube down her throat, and she knew everything that was going on.”
Friends and family started a Facebook page to initiate a prayer chain for the girl. And day by day, she began to get a little better.
“Faith is huge in our family, and the people who prayed for us made it possible for her to recover,” said Lento.
This most recent health scare did not come as a surprise to the Lentos. They were aware of the possible journey they would have to take with their daughter, even before she was out of the womb. Early tests revealed that something was wrong, but doctors were unable to determine exactly what it was. The diagnosis didn’t come until Paige was 3 months old. She remained in the hospital for the first month of her life. At 18 months old, she stopped eating and had to be fitted with a tube in her stomach, which she still has.
Paige has endured numerous surgeries and medical procedures. And the rarity of her disease makes it necessary for her parents to carry around informational material about Jeune syndrome, as many health care providers have never heard of it.
At the same time, Paige knows so much about her own health and disease and the medical jargon that accompanies it that doctors sometimes pull Pete and Kristina out of the room to talk to them in private to prevent Paige from hearing what they have to say about her problems.
Chloe Lento does not have the condition.
Despite the challenges she faces, Paige enjoys attending Easton Elementary School. She was sick when Santa Claus visited her class earlier this month, so the Easton Fire Department delivered him to her door when she got home.
She is currently on 18 medications and will have to travel to be seen by additional medical specialists in the new year, but the entire family is happy that everyone was home for the holidays.
“We’ve had to do Halloween in the hospital and a birthday in the hospital,” Pete Lento said. “But not Christmas. We made it back.”