EASTON, Maine — For Pete and Kristina Lento and their two daughters, 9-year-old Paige and 7-year-old Chloe, it has been a year of firsts for the entire family.
It was the first year that Paige Lento, who was born with Jeune syndrome, a rare genetic disorder that affects the way a child’s cartilage and bones develop, has ever been well and energetic enough to ride a bicycle. It was the first year that her sister, Chloe, has ever been able to wake up in the morning, run to her bedside to wake her up, and find her energetic enough to get out of bed and play.
But most importantly, it has been more than a full year since Paige successfully underwent a liver and kidney transplant at Boston Children’s Hospital, and for the first time, her father said earlier this week, “she feels healthy enough to be a kid.”
“Her recovery has been amazing,” Peter Lento said on Tuesday. “Over the past year, she has gained 11 pounds and grown four inches. Prior to the transplant, it would have taken us years to see that kind of growth and weight gain. She is back in school now and not being tutored in hospitals or via distance education. This summer, we watched her play outside just like a normal fourth grader, riding a bike for the first time.”
Paige Lento underwent a 12-hour surgery on Oct. 7, 2013, and suffered no complications.
In concert with breathing and lung issues, children with Jeune Syndrome can develop life-threatening kidney problems, according to the National Institutes of Health. Patients can be treated, but they cannot be cured.
Because her kidneys had failed so badly, she spent more than a month at the Boston hospital undergoing dialysis treatment prior to her transplant surgery. Family and friends of the Easton youth were amazed at how quickly she rebounded, spending only 16 days in the hospital.
Afterwards, Paige and her mother stayed in nearby Natick, Massachusetts, because Paige had to return to the hospital frequently for treatment. Now, Pete Lento said on Tuesday, Paige has to return to the city for treatment just once a month.
“Soon, she will only have to go once every two or three months or so,” he said. “She has had no issues with organ rejection. They have cut down a lot on the amount of medication that she has to take. Prior to the organ transplant surgery, her skin tone was very yellow due to jaundice. Now, she has a normal skin tone, and it became that way almost immediately after her surgery.”
Lento said that he and his wife believe that their daughter realizes how her life has changed since she received the new organs, and how much better and more energetic she feels. The entire family recognizes and never forgets, he said, that a child had to die in order for Paige to receive organs in order to live. That act inspired him to become a volunteer for the New England Organ Bank, where he provides public education about organ donation and how to become a donor throughout the state.
Chloe Lento, who does not have Jeune Syndrome, has gained something from the transplant surgery.
“She has her sister back,” Lento said. “They can actually be sisters that run and play together, ride bicycles and horses and go to school together. Chloe had only ever known Paige as the sister that could lie on the couch and play with her Kindle or watch television because that is all she had the energy for. Now, Chloe jumps out of bed and runs to get Paige and they go off and play together. Paige has gotten a whole new lease on life.”
To learn more about organ donation or to register to become a donor, log on to donatelifenewengland.org/.