Radiothon

The 2020 Hasbro Children's Hospital Radiothon

Meet Savannah. A little girl with a lot of heart.

Radiothon 2019At just 15 months, Savannah Atkins of Burrillville, Rhode Island was diagnosed with periventricular leukomalacia (PVL), a brain condition that adversely affects motor development and speech ability. The condition is characterized by damage to the white matter around the ventricles. This white matter transmits messages between different nerve cells and parts of the brain. Children with PVL are also at higher risk for other medical complications—such as cerebral palsy—which, unfortunately, Savannah has as well.

“No one is prepared to hear a child’s diagnosis,” says her mom, Amanda Atkins. “Our family was devastated, and we didn’t understand how much this would impact our daily lives until we started to dive into therapy.”

For Savannah, her condition presented as muscle weakness and tightness on the entire left side of her body. She also struggled to coordinate her movements and suffered from hereditary spherocytosis, a disease that affects the red blood cells and causes anemia and jaundice. Additionally, she experienced apraxia of her speech, a disorder in which a child's brain has difficulty creating sounds into syllables, syllables into words, and words into phrases.

The doctor and nurse care manager at Savannah’s pediatric office referred her to Hasbro Children’s when she was diagnosed. After receiving initial care from Roma Bhuta, DO, pediatric hematology oncology, at The Tomorrow Fund Clinic, Savannah was referred to PT/OT, and started constraint-induced movement therapy (CIMT), an innovative rehabilitation approach for children with neuromotor impairments. This included placing Savannah’s non-affected upper extremity (i.e. the right hand) in a cast, which meant she had to perform all self-care and fine-motor tasks using her left hand during the program.

“Savannah was a trooper, wearing her cast 24/7 for four weeks and attending therapy three times a week,” mom reports. “We turned our daily routines into continual therapy, thanks to our occupational therapists Alesia Disano and Alexandra Delayo; they were incredibly supportive of Savannah and our whole family. Although we were tired and stressed a lot, they kept us looking forward throughout the process. Savannah gained incredible strengths in her left arm and was able to do tasks that she was previously unable to do.”

The Atkins live on a horse farm, and these days Savannah loves going outside with mom and dad, Joseph, to enjoy the family’s six ponies and three dogs. “Most days, we have to convince her to come inside,” mom jokes. “Savannah loves music and singing, too.”

Now 3 ½ years old, Savannah’s strength, speech and coordination have all improved and she has almost caught up to her peers physically, mom says. Plus, she can participate in activities in ways she was not able to previously. “Throughout this entire process she has smiled and just tried to do her best,” mom adds. “She is a pillar of strength when we’re falling apart, and I cannot help but thank her wonderful therapists and the people of Hasbro who did everything they could to keep her motivated and excited!”