Cambell will be 13 in September. He has a diagnosis of Achondroplasia. Living in a small rural town in Ohio we drove 4 hours to a Children’s Hospital, for the first 7 years of Cambell’s life, to see specialized doctors to assure he had the best care available. He had several sets of ear tubes and 2 decompression surgeries of his cervical spine as well as bilateral osteotomies in his legs.
As he got older, Cambell started expressing that he wanted to be taller and he was showing some physical deformities of both the spine and legs. I started to research a few years prior and came upon The Paley Institute in West Palm Beach, FL. I shared the information with Cambell about lengthening and also that he may or may not be a candidate but if he wanted to visit the clinic for a consult, we could make it happen. At age 8, we traveled to Florida for a consultation at the Paley Institute.
Fast forward to the present, Cambell has had 2 spinal surgeries for decompression and fusion, and has had his arms lengthened by Dr. Feldman. He is scheduled for leg lengthening at the end of September 2021. Lengthening his arms has been life changing for Cambell. As his mother I often find myself wanting to assist him with simple chores that I was so used to doing for him or adding adaptive devices that he now can do totally on his own. One of the biggest ‘ah ha’ moments was watching him reach the faucet to turn on his own water when brushing his teeth.
The spinal surgeries have allowed him to walk with straight posture and less or no pain. Prior to surgery he was squatting every 10-15 steps to relieve pain in his back and legs. I am a firm believer that we were led to The Paley Institute and into the hands of Dr. Feldman, Dr. Huser and their amazing team. The physical therapy department is top notch and we have become part of a community that we absolutely love.
For many years I felt as if I was the only mother going through so many emotions of making tough decisions and the right decisions that would improve the quality of Cambell’s life. I vowed from the day of his diagnosis to give him the best quality of life. From our first visit with Dr. Feldman and becoming part of the community of families that are on the same and or similar journeys, I now feel like the mother that can rest assured knowing the care Cambell is getting now is top notch and I don’t need to search any farther.
Together, Cambell and I have made the decision to leave Ohio and move closer to our Florida families that understand, support and encourage us on this journey. We are excited for the upcoming lengthening and our new Florida zip code soon.
I’m always available and willing to talk and share with any parent that needs more information on our journey and experience. We stay at the Quantum House which is situated on the campus. The community living environment has also been an amazing experience for us to see so many families that are going through similar obstacles . We have made lifelong friendships that will forever be cherished.
Dr. Feldman, Dr. Huser and the team have made Cambell and I feel like family and at the end of the day, these are our people!