Mason is one of the sweetest 5-year-olds you’ll ever meet; he loves making his family laugh. Born with diastrophic dysplasia, a form of dwarfism, he required specialized care immediately. Unfortunately, his local medical team couldn’t provide for all of Mason’s needs. When he was 9 months old, his family started searching for more targeted care. They turned to a diastrophic dysplasia Facebook group and there, found a flood of mentions of Nemours Children’s Hospital, Delaware

Mason’s family reached out to Colleen Ditro, DNP, CPNP and scheduled an appointment with Dr. Stuart Mackenzie, one of our incredible pediatric orthopedic surgeons, to create a specialized care plan for him. While under the care of the Nemours Children’s Orthopedics team, they discovered Mason had scoliosis. With direction from Dr. Mackenzie, Mason’s treatment started right away. He was treated in a scoliosis cast for several years, but his spine continued to curve. He then was placed in halo traction, followed by spinal growing rod. His healing and recovery have impressed his medical team, and returns to Nemours Children’s every three months for gradual lengthening of his rods as he grows. He also undergoes rigorous physical and occupational therapy as a part of his treatment plan. 

In her own words, Mason’s mom Andrea shares the following about her family’s experience at Nemours Children’s Hospital, Delaware: 

“I am beyond grateful for the staff at Nemours. The doctors were upfront with us and showed us the reasons why they suggested specific procedures and treatments. The nurses have been the best I’ve ever seen. We spent months in the hospital, and they became like our family; they even treated Mason like he was family. When I had a concern, they immediately brought it to the doctor’s attention. 

One of our favorite moments from our stay in the hospital is Halloween. During that time, Nemours still had COVID restrictions, so we couldn’t trick-or-treat like the hospital usually does. But the nurses on the floor didn’t let that stop Mason from trick-or-treating. They got together with big candy bars, let us trick-or-treat to the nurses’ station and they gave Mason candy. Melting my heart in the process. 

Child Life was the reason we didn’t go crazy. We went from playing bingo on Wednesday to baking brownies on Friday. We played fetch with the dogs, participated in music therapy and art therapy, where Mason got to make multiple different projects. We loved decorating his walker with lights to have it festive. We were even hooked up to play video games and taught how to play a few.” 

With Mason’s recovery, his treatment will continue for years. Andrea leaves this piece of advice for families going through a similar diagnosis: “Give it time, be patient. Everyone wants to stay with their local physician and stay in their comfort zone, but trust this staff. They understand, and their knowledge amazes me. In our case, I wish we would have found them as soon as Mason was born.” 

The post Magnificent Mason and Diastrophic Dysplasia  appeared first on Nemours Blog.