A story of courage, hope and determination
When a topic comes across my desk that involves overcoming serious challenges to ultimately triumph over adversity, I jump at the chance to write about it. After all, that is what being Better Than Before is all about. Such is the case of Chandler Crews who was born with the most common form of dwarfism known as achondroplasia.
Here is her story: In 2010, Chandler made the decision to undergo a series of limb lengthening surgeries. In a span of just four years, she went from standing at 3’10” to over a foot taller at 4’11”. This journey has led her to a career as a patient advocate, public speaker, and communications professional. Indeed, she 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.
Below we talk about her journey and how she got to where she is today:
JWM: What was it like growing up with achondroplasia?
CC: Among other things, it meant being in and out of doctors’ offices, visiting different specialists and missing out on birthday parties at trampoline parks because they were a threat to my neck and spine. For me, though, that was just my normal childhood.
JWM: Did you know anyone who also had it?
CC: Yes, I did know others since I was also pretty involved in the local dwarfism community in Arkansas and the surrounding states of Missouri, Kansas, and Oklahoma. We would get together every now and then. But in my day-to-day, my peers were average height.
JWM: What went into your ultimate decision as a teenager to get limb lengthening surgery?
CC: At 16, it hit me that I wasn’t going to grow anymore. My height of 3’10” was how I was going to be for the rest of my life. I finally just got to the point where I was tired of always seeking independence. I had to modify pretty much everything in my life to achieve a simple task. I knew limb lengthening would give me the independence I was searching for daily. Besides, I was almost to the point where I needed surgery on my legs anyway to correct the bowing.
JWM: What did the surgery involve?
CC: The surgery itself entails an osteotomy, basically cutting the bone and placing either an internal or external device in or on the bone or bones. About a week after that, the lengthening begins. This happens by using an external remote control, if the lengthening device is internal, and/or turning screws on the external fixator devices outside the bone.
JWM: What an amazingly complex operation. How did your life change for you following the surgery?
CC: After going through two leg lengthening’s and one arm lengthening, I could use public restrooms easier, drive a car without any adaptive assistance, manage hygiene more efficiently, and so on. One thing, though, that for some reason wasn’t even on my radar, was how people would treat me differently. I noticed this after realizing that I was finally able to have face-to-face communication with my peers. To me, that has been the most life-changing result, aside from being able to do day-to-day tasks more independently.
JWM: Looking back, would you opt for the surgery again?
CC: A hundred percent without any hesitation.
JWM: Chandler, it has been over ten years since your operations. Are there any scientific advancements or treatment options now that you would have considered if they’d been available back then?
CC: Since having my initial lengthening procedure in 2010, which is still currently the only elective treatment option today, there has been groundbreaking research and discovery in therapeutic treatments. The benefits of these potential new options are that they will hopefully be on the market soon. They target everything that the FGFR3 gene—the gene that makes up achondroplasia—affects. This means that those with this condition may not have to experience any life-threatening complications. Had they been available for me, I would have considered them. Especially given the positive results that have so far been seen in the trials.
JWM: What advice would you give to families with a child diagnosed with achondroplasia, or to children and teens who must navigate a world not built for people with dwarfism?
CC: What I would say to families with a new baby diagnosed with achondroplasia is that it’s okay to be sad and to mourn the loss of the baby you thought you were going to have. Eighty percent of individuals with achondroplasia are born to average-height parents. This means that having a child with achondroplasia was most likely not on the parents’ radar at all. Often times, babies aren’t diagnosed until birth, or even after. These parents don’t leave the hospital with a healthy newborn baby. They leave with a relatively healthy baby and literature on a diagnosis that they probably have never heard of—along with a long list of appointments they need that include, among other things, genetics, orthopedics, neurology. From then on, it’s more and more appointments for sleep studies, MRI’s, ear tubes, physical and occupational therapy. The list goes on. So, again, I say to these parents, it’s okay to be sad. Despite knowing my own chances of having children with achondroplasia, which is fifty percent odds, I too, would most likely mourn should I have children with this condition. Truth be told, I have suffered both emotionally and physically, and will for the rest of my life. Granted, some with this diagnosis don’t see it as suffering. But I do.
JWM: Do children and teens feel the same way?
CC: I think everyone copes differently. I’ve seen some kids who really take pride in their dwarfism. They celebrate what is called having “dwarf pride.” Others, however, see having achondroplasia as just a medical diagnosis that they have to live with. I think it’s important to just respect each other’s differences and how they choose to live their lives with dwarfism. We all navigate the world differently.
JWM: Very well said, Chandler. Now in July, you hosted the 3rd annual Achondroplasia Research Conference, the only event in North America that brings together achondroplasia patients and their caregivers to meet and hear from world-renowned physicians and researchers who are leading experts in the treatment of achondroplasia. What motivated you to start conference, and what did you hope to accomplish going forward?
CC: I was motivated to create this conference after starting my own nonprofit—The Chandler Project. Pharmaceutical and surgical limb lengthening treatment for achondroplasia is very controversial in the dwarfism community. Parents are often made to feel ashamed for wanting to seek these options to begin with. And their parents are often told from members in the community that their child is “just small, that’s all.” Unfortunately, that’s not the case whatsoever. In fact, those with achondroplasia have a fifty times higher risk of sudden infant death syndrome which is due to their many medical complications.
JWM: Where can people go for more information about achondroplasia?
CC: To read about my own personal experience, they can visit: www.chandlercrews.com or my Facebook Page, www.Facebook.com/ChandlerInBaltimore. For more about achondroplasia overall and learning about what’s new in terms of research and treatment options, both pharmaceutical and surgical, it’s: www.thechandlerproject.org. That’s where they can find the latest information surrounding achondroplasia research and treatment advancements. Furthermore, www.achondroplasia.com is also an incredible resource.
JWM: Thank you for sharing your heartwarming and compelling story. Like you, we should never give up. We must keep trying to improve our lives no matter what challenges we face. We all have concerns and conflicts that can leave us without focus or hope. However, if we choose to do so, we can maintain a positive mindset in the face of any adversity. And you, Chandler, are an inspiration to us all!
In recent weeks, there was a new development: the first medicine to treat children with achondroplasia was approved in Europe. VOXZOGO® is a once-daily injection for children with achondroplasia from the age of 2 until the growth plates are closed, which occurs after puberty when children reach their final adult height.
Note: This treatment option is also awaiting FDA approval in the U.S. later this year, making this a hopeful time.
