Andy and his brother, Josh, with their dog, Spencer
Andy, 3, has a true zest for life. He loves playing with his older brother, Josh, and their puppy and pet goat. He loves books, video games and the Baltimore Ravens. He scoots around on his wheelchair, keeping pace with his friends. He’s pretty much always smiling.
“I walked into his room one day, and he was beaming from ear to ear,” says occupational therapist Scott Frampton of his first meeting with Andy, then about 6 months old and staying in Kennedy Krieger’s inpatient hospital for a special infusion.
Andy has Bruck syndrome, a type of osteogenesis imperfecta, also known as brittle bone disease. Both his bones and his joints are affected, explains Dr. Mahim Jain, director of the Institute’s Osteogenesis Imperfecta Clinic. At birth, Andy’s legs were bent so far behind him that his feet were touching his back. He’s experienced close to two dozen bone fractures.
It’s possible that Andy has been admitted to Kennedy Krieger’s inpatient hospital more times than any other child over the past decade, says Dr. Michelle Melicosta, the Institute’s associate chief medical officer. That’s because every two to three months, from 5 months to 2 years old, Andy spent a weekend at the Institute’s hospital receiving a special infusion to strengthen his bones.
“We wanted to have him under full observation during those early infusions,” Dr. Melicosta explains. “And by infusing over the weekends, we could support his parents by minimizing their time off work.”
Once Andy turned 2, he could receive the infusions in the Institute’s outpatient clinic, but he returned to the inpatient hospital about six months later for a longer stay following orthopedic surgery at The Johns Hopkins Hospital to straighten his legs.
Pretty much from the get-go, I felt comfortable that Andy was in the right place.” – Christina
10 Incredible Days
“It was wonderful for all of us to see him again, and to see how far he’s come,” Dr. Melicosta says. A full interdisciplinary team rallied around Andy to help him recover from the surgery, sit and stand upright, and get ready to walk.
Andy with his parents, Christina and Tom;
brother, Josh; and dog, Spencer
“He mastered sitting and standing on Day 1,” says his dad, Tom. “He literally blew everyone’s mind away. I remember Dr. Jain looking at him in awe.”
“He showed so much progress each day,” adds physical therapist Dr. Rebecca Schlesinger, who introduced Andy to a device that could support him in a standing position. “We got him to be able to stand safely for the first time in his life, and he loved it.”
During the 10-day admission, Andy received daily physical therapy and occupational therapy, as well as aquatic therapy and time with the Institute’s child life and therapeutic recreation specialists. Each day, he’d master new goals and skills, all under the watchful eyes of his care team, who ensured his safety at every turn.
Comprehensive Care
“We loved how kind the nurses and other staff members were, keeping Andy busy, making time for us to have a break, organizing entertainments for the kids and pizza for the parents,” says his mom, Christina. “There were even people going around singing, playing music or blowing bubbles. That always brightened Andy’s day.”
By Day 10, Andy was scooting around, showing off all he’d learned. “His rehabilitation didn’t just help him function better—it made him happy,” says physical therapist Dr. Christopher Joseph. “It was really good for his mental health.”
Kennedy Krieger nurses Sheilagh Franiak (left) and Shaneeta Scott (right) entertain Andy and monitor his infusion at a recent appointment.
Christina and Tom, who adopted Andy when he was 3 days old, are grateful to have Kennedy Krieger in their home state of Maryland.
“Pretty much from the get-go, I felt comfortable that Andy was in the right place,” Christina says. “His care team is always patient and willing to answer questions. No one ever says ‘never.’ It’s always, ‘Let’s try this.’ It’s so comforting to know Kennedy Krieger is there for us.”
