Rare Bone Disease Brings Siblings Together for Emotional First-Time Encounter
Two siblings born with the same rare bone disease meet for the first time
Two young siblings who had never seen one another have been brought together by the rare bone disease that split them apart.
Genesis Alecza Baide-Munoz, 2, and her big brother, Jordan Noland, 17, met for the first time this month when “Genny” traveled from Honduras to the United States for medical treatment.
Both she and Jordan, who was raised by adoptive parents in Pennsylvania, were born with Osteogenesis imperfecta (also known as brittle bone disease), a genetic disorder that causes bones to break easily.
“With OI, the smallest thing can cause a fracture,” says Dr. Maureen Maciel, a surgeon and Acting Chief of Staff at Shriners Hospital for Children in Tampa, Florida, where the siblings united. “Sitting the wrong way can fracture a leg. A sneeze can break a rib.”
The condition has varying degrees of severity and can be debilitating, leaving people unable to walk.
Such is the case with Genny and Jordan, who were born 15 years apart in a remote mountain hamlet near Santa B rbara in Honduras. The siblings inherited a form of OI that will not allow their leg bones to bear weight.
The disease separated the family when Jordan was an infant.
“When he was a baby, I knew something was wrong,” says Jordan’s biological mother, Doris Munoz, who met with PEOPLE in Tampa and spoke through an interpreter while holding Genny. “He was so little.”
Terrified at what might be afflicting her newborn, Doris carried him on a pillow down the side of a mountain, across a river in a canoe and over dirt roads by bus to a health foundation. There, a woman recognized Jordan’s severe form of OI, and told Doris that the infant needed medical treatment in the United States.
Doris entrusted Jordan to a missionary, who brought him to a Shriners Hospital in Erie, Pennsylvania. (The Shriners hospitals treat pediatric specialty cases, including children with OI.)
He looked like he was at death s door, says Janet Noland, who was a physical therapist at the Erie hospital. “He improved with medical care, but he needed more.”
Jordan’s treatment included medication and multiple surgeries to insert metal rods inside his arms, legs and spine.
“The physicians just felt if he were to return to Honduras he would not survive,” Janet says.
Doris made the heartbreaking decision to surrender her child to Janet for adoption so that he could remain in the United States.
“I cried a lot,” says Doris, who smiles at her son, who now is entering his senior year in high school. “It was for his good. But I cried a lot.”
Doris also cried when her daughter was born. “I knew right away. She had the same thing,” she says.
When Genny was accepted into an international program at Shriners, Jordan and his adoptive parents, Janet and Jim Noland, couldn’t wait to meet her. The Noland family drove for two days to unite with her and Doris in Tampa for her initial evaluation in August.
“I was so excited, I was pacing in my wheelchair,” Jordan tells PEOPLE.
He also broke his leg while traversing an unmarked speed bump, but the fracture didn’t deter him. He responded as per usual to his twice-monthly fractures.
“Wrap it, Motrin, call it a day,” Jordan says. “I’m used to it.”
The most important thing on his mind was seeing his sister for the first time.
“There were a lot of hugs and tears,” Janet says of the emotional meeting.
“I’m so happy,” Jordan says, holding hands with Doris, while beaming at Genny. “I’m in the moment.”
And the toddler was more than thrilled to have her big brother around.
“Caballo!” Genny commanded to Jordan in Spanish, signaling that she wanted him to give her a toy horse.
It’s now Genny’s turn to begin the optimal treatment plan, which includes medication, careful nutrition and surgery.
“We are just starting the process and will evaluate Genny to see how her bones respond to treatment,” says Dr. Maciel. “We will assess the long bones first.”
Doctor Maciel hopes to correct any bone deformities and eventually insert rods into Genny’s bones.
“These potentially could support weight and ambulation,” Dr. Maciel says. “They will stabilize the bone. If it does fracture, there already is an internal splint in place.”
The level of care is new to Doris.
“Here, the attention to the mother is different,” she says. “In Honduras, the doctors pay little attention. The care here is better.”
Doris says seeking medical care in her country often means waiting for hours at a clinic, only to learn there is no medicine.
“Here, they have all the medicine you need,” she adds.
The extended family reunion between the Munoz and Noland clans ended over the weekend, when everyone returned to their respective homes.
“It s sad,” Jordan says of the parting.
It won’t be for long, though. Doris and Genny return in February for her next round of treatment in Tampa. The Nolands also plan to be there.
“Florida in February,” Jordan says. “It’s much better than being in the cold. You can break a bone from shivering.”
Adds Jordan, grinning: “We’ll have a great time.”
“It will be good for them to see each other again,” Doris says. “Jordan is good to Genny. He is a special brother. I love him so much.”