Stories about: Osteogenesis Imperfecta

The art of healing: Spinal fusion patient Dylan Morang fights through pain for his art

dylan-morang-art-exhibit-1

The purpose of art is washing the dust of daily life off our souls. – Pablo Picasso

Ever since he was a young boy growing up in Rockland, Maine, Dylan Morang has been artistically inclined. His mother remembers him often sitting at his little desk, happily consumed by his coloring. When he wasn’t drawing, he was gathering inspiration along the beautiful rocky shores and through the deep woods of Maine.

Dylan is now 24, and his love of art has only grown. He studied art in college, taught himself Photoshop, and is currently exhibiting his artwork at Boston Children’s Hospital, where he underwent two surgeries for severe scoliosis and osteogenesis imperfecta, a hereditary disease that causes weak bones.

Hordes of visitors stop to admire the rich watercolor paintings and vibrant graphic designs inspired by the artist’s home: a great horned owl, a fern frond, a Chesapeake Bay blue crab. About his work, Dylan says, “I’ve just always loved art and experimenting with different color combinations.”

raccoon Owlbert

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What will happen when my doctor retires?

By Sandy Ho

Sandy Ho

I’m at that weird age where I really shouldn’t be going to a children’s hospital anymore, but I’ve been going to Boston Children’s Hospital since birth—I’m even on a first name basis with the Big Apple Circus Clown Care Unit. I’m comfortable there. They know me and I know them. But this isn’t just a matter of familiarity; it’s a matter of logistical ease. I have a brittle bone condition known as osteogenesis imperfecta (OI), and how each person with OI adapts to life tends to be very different. Having a care team that knows what has worked for me in the past (and what hasn’t) matters a lot.

It matters not only in the sense of saving time on those hour-long health care visits, but in the sense of how much pain will I be in, or how I make plans for the future. When I was little I remember my parents taking me to a specialist for nearly every part of my body. While my brothers could just receive a clean bill of health from their pediatrician in 20 minutes, I would have to make the rounds to each floor of the hospital.

When I was 5 or 6 I thought it was fun. Trying to pronounce words like “audiology” “ophthalmology” and “radiology” made hospital visits sound like a trip to some whimsical village in a Dr. Suess book. My mom would somehow finagle my appointments into one day, she’d pack a cooler with snacks and sandwiches, stuff my backpack with books and we’d be off for a picnic at the hospital.

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Our patients’ stories: A protective bubble of my own

Sandy Ho
I’ve always known my parents would forever see me as their baby. And being their little girl, I knew that it would be hard for them to watch me leave for college to live in a dorm, all by myself. I appreciate their concerns and love, but it didn’t change the fact that after high school I was ready to be on my own. As a kid with Osteogenesis Imperfecta (O.I.), a brittle bones condition, I could not wait to get out from their protective bubble, which I had lived inside of for 18 years.

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