Despite being born and raised in Little Rock, Arkansas, I like to claim Baltimore as the city where I grew up because it is … literally.
I grew up off Northern Parkway on West Belvedere Avenue in a house called the Hackerman-Patz House on the Sinai Hospital campus. The Hackerman-Patz House—what most frequent residents refer to as the “HP House” or my personal favorite, “home away from home”—was my home for six years while receiving orthopedic treatment at the International Center for Limb Lengthening (ICLL) at Sinai Hospital.
I was born with the most common form of dwarfism, achondroplasia. A genetic mutation of the FGFR3 gene causes achondroplasia, and in turn, it slows down the process of cartilage turning into bone. This condition affects many areas of the body, but the most noticeable effect is in the arms and legs. These effects cause those with the condition to have orthopedic complications and many other health concerns—some even life-threatening—that require close monitoring.
When I was 16, my overall health and well-being was changing. I was at my adult height of 3 feet, 10 inches and becoming much more immobile as a result of having achondroplasia. My legs were severely bowed, and I knew surgery was on the horizon. I couldn’t walk more than a city block, and I was frustrated with not being physically able to do things. On a family vacation in Eureka Springs, Arkansas, I told my mom, “I need you to just make me do it.” The ‘it’ was limb lengthening.
Limb lengthening is currently the only treatment option available for those with achondroplasia. Very few institutes and specialists in the United States specialize in this treatment. One of those places is here in Baltimore at the ICLL. In 2003, a year after my last trip to the ICLL, Dr. Shawn Standard arrived. It’s because of the ICLL and Dr. Standard that I “grew up” here in Baltimore.
Once I met Dr. Standard, I knew immediately that he was the orthopedist I wanted treating me. After scheduling my surgery, my mom and I had Old Bay fries and went to the Inner Harbor to think about all that was going to happen. We discussed what this surgery meant for me and how everything was about to change.
Three weeks later, we moved into the HP House, and my new life began. This journey did so much more than make me 13 inches taller. My life is completely different now. Before my surgeries, I couldn’t walk a city block. Today, I work out at Pure Barre in Roland Park every single day. I’m physically active. I can drive a car without adaptations, and at 4 feet 11 inches, I’m actually able to have face-to-face conversations.
As a patient advocate, it’s my mission to spread awareness about achondroplasia and what it entails medically. I’ve been sharing my patient journey for 11 years now through my Facebook page, Chandler in Baltimore. Although limb lengthening is the only treatment option available to those with achondroplasia today, a new pharmaceutical option will hopefully be on the market by the end of 2021.* This introduction inspired me to start the now annual Achondroplasia Research Conference that has taken place in Baltimore during the past three years, most recently this past July at the Royal Sonesta Harbor Court hotel on the Inner Harbor.
I may not have had the typical Baltimore childhood—which I imagine is crab cakes for breakfast, lunch and dinner; field trips to the BMA and Fort McHenry; summer days at Camden Yards, Sunday nights in front of the TV rooting for the Ravens and weekly grocery store runs to Wegmans. But I did get to experience these things while “growing up” at 16.
From a little girl in Little Rock who wanted more of her life, I’m proud to call Baltimore the city where I “grew up.” It’s given me anything I ever could have wanted and more.
Chandler Crews was born with achondroplasia and is the founder and president of The Chandler Project, a nonprofit patient-focused organization dedicated to providing education and resources on the latest research and development in pharmaceutical advancements and surgical treatment options for those affected by achondroplasia.
*Editor’s Note: As of press time, the European Union approved a treatment for achondroplasia. This treatment is awaiting FDA approval.
Hi my name is Miranda Hendricks, I just saw a video of this on Snapchat. The channel was My Radical Life. It was an inspiration to watch. My daughter has Achondroplasia and I want to learn more for her and my sake. If you could please pass this to Chandler or send me any contact information if possible I would really appreciate it. Thank you.