by Jessica Ennis
photos by Dana Johnson
David and Laurie Novak thought they were done raising kids. The couple, who live in Henderson, Tenn., had three grown children of their own in addition to the 10 foster children they had cared for over the years.
But in December 2003, a phone call changed everything. It was the Tennessee Children's Home calling about a 17-month-old girl named Alexia who had been in and out of two other homes that week. The children's home has called on the Novaks several times to care for children who are often hard to place in other foster homes. The organization asked if the Novaks would take the girl, and possibly her baby brother, Robbie.
The Novaks were told that Alexia was healthy, but her bones broke easier than other children's because she had a minor condition called Osteogenesis Imperfecta (OI). They agreed to take Alexia and Robbie, assuming they would only be caring for the children just until they were adopted or were returned to their biological family.
"Alexia came to us as a normal child, but she was so fragile," Laurie said. "There is no way she had ever walked before, although we were told she could walk with braces."
She was very small for her age, and very quiet. She would smile, though her smiles would turn into pained grimaces when Laurie or David would pick her up. "We realized that she hurt everywhere from all her past fractures," David said.
"I remember very carefully holding her," Laurie added. "We got on the Internet to try to find out as much information as we could about her disease."
What they found was troubling. OI is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. It's a relatively rare disease, affecting 20,000 to 50,000 people living in the United States. It is a collagen defect that can cause a variety of potentially debilitating symptoms and conditions including short stature, poor muscle development in arms and legs and a barrel-shaped rib cage, spinal curvature, respiratory problems, hearing loss and brittle teeth.
Two weeks after getting Alexia, Robbie came to live with the Novaks. The 2-month-old boy had OI and only weighed 6 pounds. After just four days with them, Robbie woke up screaming.
Even when a cast covered half his body, Robbie Novak found a way to smile. Photo courtesy Novak family.
"He was inconsolable; we assumed we were dealing with a fracture, but not absolutely sure, as we had not dealt with anything like this before," David said.
The Novaks rushed him to their local emergency department, not knowing for sure what was broken, and not even knowing Robbie's legal last name. He had broken his tibia and it was casted up to the knee. The weight of the tibia cast broke his femur. He spent three days in the hospital hooked up to morphine while the Novaks tried to find a doctor who would treat him.
It was very overwhelming for the Novaks; all their years of parenting and fostering children had not prepared them to care for two small children who were so fragile. The couple had many heavy-hearted discussions questioning if they could provide the type of care that Alexia and Robbie desperately needed. Then they prayed. If they couldn't take care of them, who would?
After being connected with a family who had a child with OI, they learned of a relatively new drug called Pamidronate that takes away bone pain and helps strengthen weak bones in children with OI. After a trip to Shriner's Hospital in Lexington, Ky., they were able to start Alexia on the therapy, but were told Robbie must wait until he was 2 to begin treatment.
They soon learned that the Monroe Carell Jr. Children's Hospital at Vanderbilt provided the treatment to children as young as newborns, and both of the children could be treated in Nashville. The results were dramatic - Alexia and Robbie were no longer in pain, and their bones became stronger. Their personalities started to shine.
"They are our little miracles," Laurie said. "They are ‘normal' kids because of Pamidronate."
Although Alexia and Robbie are able to do most things normal children can do, they still are at great risk of breaking their bones and require quarterly trips to Children's Hospital where they are examined by doctors and receive two full days of Pamidronate infusions. The medicine is not a cure, but their fracture rate is much lower. With their bone pain gone, they move more and develop more muscle, which helps protect the bone.
While they are at Children's Hospital, the siblings love to take advantage of the activities offered to patients.
"We always find out what's going on at the hospital, because the kids love the distraction. Robbie loves bingo night and still plays with a little toy airplane he won last time we were there," Laurie said. "The kids love music, too, and Robbie really gets into the show."
Robbie and Alexia Novak are very close, and have always enjoyed the beach. Photo courtesy Novak family.
Alexia has suffered at least 60 breaks and Robbie has experienced around 25 so far. They've both had several surgeries to straighten their bowed bones with metal rods, and will likely have dozens more as they grow older. Gregory A. Mencio, M.D., director of Pediatric Orthopaedics at the Children's Hospital, is Robbie and Alexia's surgeon.
"We have about 20 to 30 OI kids in our practice, and we see them a lot," Mencio said. "In terms of OI, Robbie and Alexia's are moderate, they don't have bad deformities and they can walk normally. The treatments will help cut down on the fractures, and will allow them to run and play and do what other kids do."
"Robbie has re-learned to walk several times because of his surgeries. He has the barreled rib cage, and tends to have respiratory issues, and can get pneumonia easily," Laurie said.
On Robbie's fourth birthday, Laurie recalls Robbie telling her, "I 4? I reelry 4?" Then he looked down at his feet, and looked himself up and down and said, "But I still widdle!"
"I told him, ‘This bad bone disease is always going to keep you smaller than your friends, but you have a big spirit and big dreams.' He talks real big; he wants to be a football player or a soccer player."
But Robbie doesn't let his size nor his disease define him. He has a mischievous streak and is constantly testing his limits. The Novaks have on more than one occasion caught him dangling precariously while using the furniture and other objects as his own personal jungle gym.
Alexia is more laid back and is always smiling. She recently started taking tap dance class, although Laurie had a difficult time convincing her teacher, who feared she would get hurt, to let her participate.
"We don't stop her from doing what she wants to do, within reason," Laurie said. "I told the teacher, I have a little girl begging me to take tap dance."
Alexia didn't start walking independently until she was almost 4, and now there is no stopping her, unless she has a fracture, but even then she is back up and going as soon as possible.
She has very weak ankles and her left leg is nearly 2 inches shorter than her right, requiring her to wear a lift. Alexia had her first dance recital on May 18, and Laurie and David even pushed back a surgery to replace metal rods in her legs so she could take the stage with her classmates. "She was amazing," Laurie said. "You would never know all that she has been through the past five years as she sang and danced to "I Love To Walk In The Rain" in her raincoat, hat and boots. To us, she was the best in her class.
Both children are intelligent, strong-willed and incredibly close. Robbie loves looking after his older sister. The Novaks are determined to let them live their lives as normally as possible.
"We try to treat them as normal kids; they have to pick their toys up just like everybody else. There's no special treatment," David said. "They get stronger and respond better if they do more."
In 2006, the Novaks adopted Robbie and Alexia.
"God has a plan. It was meant to be," Laurie said.
© 2016 Monroe Carell Jr. Children's Hospital at Vanderbilt