Ava F Burton's unofficial best friend

"Children's Specialized Hospital feels like summer camp"

Ava was diagnosed with Type 1 Spinal Muscular Atrophy (SMA), a genetic disease affecting part of the nervous system, when she was born - it affected her muscle movement and she wasn't able to hold her head up or move her arms and legs. Those with SMA often suffer from weak intercostal muscles (muscles between the ribs) which affect normal breathing rhythm as well, and Ava’s physiatrist, Dr. Michele Fantasia, explained that due to the severe weakness caused by the death of motor neurons, infants are extremely susceptible to respiratory illnesses – especially a common viral illness that spreads like the common cold, Respiratory Synthetic Virus (RSV).

When Ava contracted RSV in January 2018, she was immediately transferred to Children’s Specialized Hospital in New Brunswick. Upon her arrival, she had limited movement in her forearms, struggled to hold her head up, and couldn’t move her legs. Ava began working with Children’s Specialized Hospital physiatrist, Dr. Fantasia, as physical medicine and rehabilitation specialist focused on muscle, nerve, and bone conditions. Together they created an intensive therapy plan working hard to improve her muscle strength and after several weeks of physical, occupational, and pool therapy, Ava began to move her arms and legs and she was able to hold her head up.

“It’s incredible to see the progress Ava has made in such a short period of time,” Ava’s mom, Laura, said in amazement. “She doesn’t even need breathing support anymore. She is hitting major milestones for a child her age.”

Besides the amazing therapists that have helped Ava reach new heights, one very special Children’s Specialized employee has had a profound impact on her experience at the inpatient hospital. Laura’s face lights up as she describes the joy and excitement that Burton, the two-year-old hospital therapy dog, brings into Ava’s therapy sessions. During therapy, Burton positions himself across from Ava so that she can work on stretching and moving her arms to reach him. He runs back and forth across the room so that she works on turning her head from side to side. She stays extremely focused on Burton throughout sessions which makes therapy all that more entertaining for her.

“Burton is her motivator,” Laura said, grateful for Burton’s assistance and companionship. “He’s extremely energetic and friendly which really helps her forget how difficult the movements are.”

However, the therapy isn’t for Ava alone. The team of nurses, therapists, and doctors at Children’s Specialized are committed to ensuring every child has a smooth transition back into their everyday lives. For Laura, this meant taking Ava on field trips to local parks during their final weeks of their stay to learn how to navigate the swing sets and play with the goats at the local petting zoo.

“It was great to get out of the hospital and have that real life experience with Ava,” said Laura. “Especially because I knew I had the support of our therapy team behind us in case I needed help.”

Although Ava and Laura have returned home, they recently began outpatient therapy at the Children’s Specialized Clifton location.

“Seeing how well Ava was treated at Children’s Specialized and how incredible her progress has been, we decided it was best to continue using the hospital’s services,” said Laura. “When we were sent here, we thought this would just be another hospital our daughter had to go to. Instead, it feels like my daughter is at a summer camp, and she’s going to leave summer camp stronger.”

Learn more about our comprehensive inpatient rehabilitation programs and outpatient physiatry program at www.childrens-specialzied.org.