For the past seven years, Aeleen Antonia Perez Pacheco hasn't been able to do anything physical beyond walking with a brace. The 15–year–old has been in constant pain and was in danger of losing her left leg.
She saw a parade of doctors in her native Chile, who knew what the problem was, but could offer no relief. Aeleen has a rare genetic bone condition called fibrous dysplasia, and physicians there didn't have the expertise or the medical equipment to treat her disease.
With this condition, fibrous tissue grows instead of normal bone, making her leg extremely fragile. The bone bows at an abnormal angle, which puts stress on it and triggers pain. Should the bone break, her leg would need to be amputated because it is unable to heal.
But through the non–profit Healing the Children, Aeleen was brought to the U.S., where Dr. Brian Bauer, an orthopedic surgeon from Holy Name Medical Center, performed surgery to protect the bone and keep it from breaking.
"The surgery went well and she's going to be okay – she'll be able to keep her leg," Dr. Bauer said after the surgery. "She's such a friendly kid, with a beautiful face, and she was so grateful."
Dr. Bauer shored up her leg with three titanium rods that will strengthen it and eliminate most, if not all of her pain. Two months after the surgery, her leg looks good and doesn't bow as much, though she uses crutches and has a small incision a few inches long below her knee. The scar marks the spot where Dr. Bauer tunneled the rods through the length of her lower leg. It was not an easy surgery.
"Many doctors, especially in third–world countries, are afraid to do this because you can break the bone during the procedure and then knowing it won't heal, you have to take the leg," Dr. Bauer said. "But for this young girl to have to go through life with one leg would have been such a shame."
Healing the Children provides medical care locally and internationally to children recommended by a wide variety of sources. Dr. Bauer has been involved with the nonprofit for two decades, offering his services free of charge. Holy Name has partnered with Healing the Children since the 1980s, also waiving its fees for these youngsters. The Medical Center hosts a child every couple of years. Prior to Aeleen, a 10–year Kazakhstan boy from an orphanage needed surgery on his misshaped wrists in 2014.
"Helping these children is part of Holy Name's mission – a ministry of healing," said Michael Maron, President and CEO of Holy Name. "And who better to receive assistance in recovery than innocent children facing challenges most adults can't even imagine."
As for Aeleen, she is currently on crutches while waiting for a brace that is being custom–made for her. No one is sure how long she'll need the brace, but it should be less cumbersome than the one she had in Chile and enable her to move more freely.
"I haven't done any type of exercise since I was eight and I want to do that again," said a soft–spoken Aeleen in Spanish. "I'm so grateful to Dr. Bauer and everyone at Holy Name for all they've done for me. They've been so nice to me and made me feel so comfortable. I would never have had all this in Chile."
Aeleen is especially grateful to her host family, John and Mary Silverberg of Suffern, N.Y., who agreed to care for her while she's in the U.S. This is the fourth child the Silverbergs have taken in through Healing the Children.
"It's very fulfilling – they become part of the family," John said. "It's hard when they leave, but Healing the Children sends us emails to keep us updated on how they're doing."
Aeleen comes from a large extended family, most of them seeing her off at the Chile airport when she left in June. Mary Silverberg said that makes sending Aeleen home less sad.
"When you know they have a loving family that cares for them, it's so much easier," she said. "I know she's enjoying her stay but she misses her family."
The highlight of her trip to the U.S. has been a quick jaunt to Atlantic City, where she saw the beach and travelled the boardwalk. But the best is yet to come. The Silverberg's are taking Aeleen to Disney World for a week.
"I watch movies on the Disney Channel back home and my dream has always been to go to Disney World," Aeleen said. "I can't wait."
With her recovery going well, Aeleen should be able to return to Chile in September.
