This is a story about perseverance. Steven Jr. was born May 27, 2008, with a rare congenital bone disorder commonly referred to as brittle bone disease. Undiagnosed until after delivery, Steven entered the world with over 40 fractures, a shattered skull and hemorrhaging in his brain. He left the hospital on hospice care, but he steadily began to improve. That’s the beginning of his story, and he’s been persevering ever since.
“He still breaks all the time,” said his mom, Becky. “He’s probably had more than 100 breaks since he was born, and he just had another cast removed. But we try to live as happy as possible and not let the disease define us.”
Steven gets infusions every three months at Riley Hospital to strengthen his bones, but there is no cure for his condition, and he doesn’t like his treatments.
“You would think he would be used to it by now, but it’s still a battle,” Becky said. “He’s been through a lot of surgeries and had rods inserted into his arms and legs to straighten out his bones and make them stronger. At least when the bones break now, it’s not as severe. As he grows, though, the rods will have to continue to be replaced.”
Steven is a little delayed developmentally, which Becky said may be due to the trauma of his birth and his spending the first year of life literally lying on a pillow. But he is in a regular first grade classroom and receives private instruction for an hour and a half each day in addition to occupational and physical therapies. He is working on strengthening his legs, so he can someday walk with a walker instead of relying on his wheelchair.
“When it comes to things he loves, like dinosaurs, he is so smart,” Becky noted. “But things he is not interested in–like school–he just doesn’t care.”
His favorite pastime is playing the Godzilla app on his iPad. He enjoys swimming and watching movies, and he reads every night before bed. He also plays with his healthy and “very rambunctious” three-year-old twin sisters.
“Steven is a bit of a loner,” Becky added, “so the girls are really good interaction for him. They play all the time, and they’ll do anything for him.”
CICOA provides an aide that comes Monday through Friday, 3 to 5:30 p.m. to provide after school care until Steven’s parents get home from work. He also is approved for respite hours, but Becky said finding qualified attendants to care for him, particularly on the weekends, is a struggle. Instead, she relies on her parents to drive down from Fort Wayne.
“Adjusting to a child who is so fragile was certainly a challenge,” Becky said. “My husband is a firefighter, though, so he was comfortable flushing Steven’s port and attending to his g-tube, which he had when he was younger. But you learn what you need to know, and it becomes a new normal,” she said.
Perseverance, it seems, runs in the family.