Rare Osteogenesis Imperfecta Disease Brings Families Together

One of our highlights of a recent trip to Boston was meeting Chandler Rowland and his mother, Robin. We happened to make their acquaintance because Robin and her husband had donated a four-day stay in their apartment for a benefit auction. We were the lucky winners of the stay.

I was curious about why the Rowlands had donated such a generous item to the Osteogenesis Imperfecta (O.I.) benefit in Chicago. We were there because our four-year old granddaughter, Maggie, has this rare disease, commonly known as Brittle Bone disease. The Rowland’s donated their place because their 33-year old son, Chandler also has O.I. While Maggie and Chandler have different types and therefore different challenges, they share the bond of this rare disease. And, like all of us who might wear glasses, have orthotics in our shoes or dyslexia, their disabilities do not define who they are as a person.

Let me tell you a little about Chandler….

Chandler grew up on Nantucket Island outside of Boston with his parents and younger sister. He, like other O.I. sufferers, has had several breaks and fractures. He has rod implants in his legs and was treated with bisphosponates growing up – the only known treatment to help create bone density, although it is still the accumulation of bad bone in the case of O.I. He is a small person at three-feet three-inches and has been in a wheel chair since a small boy. His parents ran down every possible avenue for treatment to ease Chandler’s symptoms. Today, Chandler lives independently in Boston with the help of caregivers several times a day.

If you think his life sounds difficult, Chandler’s mother says he just doesn’t think about it – this is the body God gave him. As a toddler, Chandler would scoot around making his way wherever he pleased. Growing up he was a fierce warrior of video games and loved Star Wars and Star Trek. Chandler earned a degree in communications and is an avid science fiction enthusiast. He enjoys attending Sci-Fi fantasy shows, is a member of a horror book and a Sci-Fi group.

He is a highly creative young man who has combined his passions for art and science fiction into a career as a 3-D artist. He has created over 150 aliens, monsters and characters from lost civilizations. Among his fascinating creatures are: Thnurmiotts, a multi-intelligent species that lives on the planet Zorph. Thnurnoitts co-exist with The Mebe, a mindless eating machine; the peace loving Anotragon, and the Sporgs that has the ability to morph into any shape it likes. The stars of the universe are the Phneerges that are from Zorph but have made their way to Earth. According to Chandler, they are very helpful although he has yet to specify what their exact capabilities are. All of his creations are available for purchase.

Each character takes a few hours to draw and then another few to create on the 3-D printer he has in his apartment. While Chandler has full small motor skills, his small stature is aided by an adaptor to attach a flashlight for his work and he has a stick that enables him to reach all the items he needs. You can find these interesting 3-D art forms at ChandlerRowland.com or Shapeways.com, Perhaps you may have seen them at art walks around Boston.

Chandler believes that 3-D printing is quickly progressing and is getting better and cheaper all the time. But what about his art? He has had a tough time kick-starting his fledgling career for these amazing creatures. Please visit his website and let him know what you think. Perhaps you would like to begin your own collection and create your own story about them. For myself, I am the proud owner of a wind-blown tree with a solid root system, and a facial expression you would expect to find when you are being blown to high heaven.

Please visit Candler’s website (www.chandlerrowland.com) see his art and let him know how you like it! You can help him jump start his business by sharing this post.