Scott Beal jokes that thanks to his son, he no longer has a name.
“I’m not ‘Scott’ anymore,” he laughed. “I’m now just called ‘Spencer’s dad.’”
Not that Scott or his wife, Brianna, mind. The story of their 7-year-old son has touched many families in the couple’s hometown of Dover, Ohio. Born with a form of dwarfism, Spencer has faced numerous challenges caused by the condition. But this deep, caring and compassionate child has overcome every one with the support of his family and Akron Children’s Hospital.
“No matter what’s come in Spencer’s way, he tackles everything with a positive attitude and cheerful spirit,” said Brianna. “He’s a special soul.”
Taking on the unexpected
While dwarfism is typically discovered before birth, Spencer wasn’t diagnosed with Achondroplasia, a form of the condition, until he was 5 months old.
During the family’s first trip to visit the specialists at Akron Children’s skeletal dysplasia center, Spencer stopped breathing in his car seat.
“It was terrifying,” recalled Scott. “He had what’s called central apnea, which is compression around the cervical spine that cuts off oxygen and blood flow to his brain. It’s a complication with his condition.”
He underwent neurosurgery to correct the issue, which thankfully caused no lasting effects. It was the first of 10 surgeries Spencer would undergo in the next 6 years.
“Some were minor, such as ear tubes or having his tonsils and adenoids removed,” said Brianna. “But he’s also had surgery on his legs, eyes and most recently his ears.”
“The two orthopedic areas of concerns for patients with achondroplasia are bowing of the legs and kyphosis deformity of the spine, which is when the spine protrudes out the back,” said William Schrader, MD, co-director of the multidisciplinary clinic for osteogenesis imperfecta and the pediatric orthopedic surgical consultant for the skeletal dysplasia clinic. “We’ve been evaluating and following Spencer for these issues. So far, with careful observation, we’ve been able to avoid major surgery.”
Through it all, Spencer’s bright personality and sweet spirit made it easier on his parents and his 6 siblings, as did the team at Akron Children’s skeletal dysplasia center.
Making a hard road easier
Scott and Brianna are quick to praise the care they receive at Akron Children’s, particularly from Dr. Schrader and Dennis Weiner, MD, co-founder and co-director of the skeletal dysplasia center.
“We have complete confidence in them,” said Scott. “As parents of a child with an uncommon condition with so many unknowns, I don’t think I can put into words what that has meant.”
“Spencer’s done an exceptional job of going through surgeries and keeping a strong, positive attitude. He’s sailed through these adversities beautifully,” said Dr. Weiner. “We’re following his growth and still see him regularly for full medical evaluations from our center’s team of geneticists, pediatricians, orthopedic surgeons and more. All our patients get a complete history and physical every time they visit the clinic.”
Now, the Beals will be giving back to the hospital as Change Bandits for the upcoming “Have a Heart, Do Your Part” Radiothon. Brianna said it’s the least they could do to help the people who’ve done so much to support her family.
“It’s easy for us to be big cheerleaders for Akron Children’s,” she said. “I’m excited that we’re getting our community involved. This town loves Spencer. All the money we can help raise will continue to make Akron Children’s a beautiful place for my family and my son to go for care.”
Hear Spencer’s story – and those of other patients – by tuning in to the 18th annual 98.1 KDD “Have a Heart, Do Your Part Radiothon,” broadcast live from Akron Children’s Hospital Atrium Feb. 9-11.