Boy with brittle bone disease helps other kids
BRAINERD, Minn. -- Looking at wide-eyed little Caleb Pence, you’d never guess he has suffered through so much.
The 7-year-old is the first to bring back a sticker from the doctor’s office for each of his three siblings. He’ll crack a joke to get a smile out of you.
But stare a little deeper into those wide eyes and you’ll see the white of his eye has a blue tint. That’s the first sign of osteogenesis imperfecta, or brittle bone disease.
Caleb has broken at least 11 bones that his parents know of, though they’re guessing that number is much higher.
He is breaks include his leg, arm, pelvis and foot.
The rare disease sends the young boy to the doctor more than other kids his age.
Caleb knows just how scary a hospital can be. That’s why when his parents asked him what he wanted to do for his seventh birthday, celebrated on Valentine’s Day, Caleb chose to create something that would help put kids at ease once at the doctor’s office.
They’re called “Caleb’s Imagination Kits.”
To an adult, it’s a Ziploc baggie full of pipe cleaners, crayons, fabric squares, glue sticks, stickers and googly eyes.
“It looks like it came out of a junk drawer,” joked Caleb’s dad, Chris Pence.
“That and craft closets,” added his mom, Megan Pence.
But to a child, it can be anything. The makings for a castle. A space station.
Caleb made a disco dance scene with his first kit.
Caleb saw the idea on his first visit to Gillette Children’s Hospital in St. Paul about a year ago. Uneasy about the needles and strange people around him, the trinkets in the baggie gave Caleb something fun to concentrate on.
But the baggies ran out by Caleb’s next visit.
For his birthday this past weekend, Caleb and his parents asked friends, family and church members to bring in whatever craft supplies they had. Together, they formed an assembly line. Caleb’s post was at the end of the line, where he snapped each bag shut and offered a cheerful “thank you” to each person.
Caleb’s first broken bone came when his was 16-months-old. He was climbing a slide and broke his foot.
Doctors attributed it to Caleb being a kid, being “unlucky.”
But then the youngster broke his arm in several places during a soccer game. Not long after, he broke his pelvis after falling off a 1-foot tall wall.
Chris and Megan knew something was wrong.
“It’s not like he was diving off the deck. This was just minimal activity,” Chris said.
So they kept pushing, and after a few tests about a year ago, Caleb was diagnosed with type one (a lower level) brittle bone disease.
To prevent future breaks, doctors put the young boy on an infusion medication, which requires him to go to the hospital four times a year, for three days at a time, and get the medication through an IV.
He’ll have to continue the treatment until he stops growing.
So far it’s working. He hasn’t broken a bone in the year since he started the treatment.
He’s even had some hard falls, gotten up and said, “Hey, I didn’t break anything,” his parents say.
Caleb wants the imagination kits to offer some memories for his peers at the hospital.
“Before this,” he said, gripping a kit, “I was really bored at the hospital.”
Megan hopes the imagination kits will change the whole hospital experience for each family.
“Instead of dread, they might feel like it could be fun,” she said. “It’s something to look forward to.”
It’s reassuring to the parents, Chris said, as they see a calmness come over their child while they get their treatments.
“Plus you see that someone else has gone through it,” he said.
Caleb will always have brittle bone disease, but even at the young age of 7, he knows he wants to use the diagnosis to help others.
The talkative boy added, “I really like helping other kids.”