In 2019, while pregnant with my second son, we learned that he would be born with dwarfism. Though both my husband and I are on the short side of average height, we did not have a lot of experience with dwarfism and were unsure of how that would impact our son’s quality of life. We did what all parents would do and learned as much as we could about dwarfism and connected with other families. In June of 2019, Lincoln was born 12 weeks early due to other pregnancy complications. His dwarfism diagnosis became an afterthought, and the focus became getting him to eat and breathe on his own as we struggled through an extended NICU stay.
After being released from the NICU, Lincoln was followed by a local pediatrician and medical team, but after having a short-term episode of paralysis at 2 years old, they referred us to Nemours Children’s Hospital, Delaware. Nemours is a 6-hour drive from our home, but we had heard through our LPA connections that they were the best of the best, so we were willing to give it a try! Lincoln was seen within a couple of weeks and scheduled for decompression surgery by Dr. Campbell within the month. We were so impressed by how thorough the medical team was and how experienced they were with people with dwarfism. It felt good to have people on our team who knew what to expect, how to treat various complications, and who were unapologetic about his diagnosis. That might sound harsh but, honestly, pity isn’t helpful or necessary. Support, knowledge, acceptance, and understanding are and that’s what Lincoln and our entire family receive from every staff member at Nemours—from the cleaners we pass in the hallways to the surgeons that operate on him—everyone is cheering him on. He lovingly started referring to his trips to Nemours as “going to the nice doctors.”
Every single person we have interacted with has treated Lincoln with the utmost respect. Even though he is only 4, they listen to what he is saying, discuss all his medical treatments with him (not just us), and make him feel comfortable and at ease while undergoing so many hard things. The amount of people and departments who have been involved with Lincoln’s care include orthotics, audiology, the gait lab, PT, hospital social workers, neurosurgery, anesthesia, operating room staff, in-patient staff, the cast room, radiology, genetics, pulmonology, and countless incredible nurses! Since those initial visits, Lincoln has had many follow-ups and several in-patient procedures. Most recently, he had ankle and knee surgery by Dr. Mackenzie to hopefully eliminate the pain he was complaining about in his ankles and to reduce the bowing in his lower legs. Lincoln needed casts on both ankles for this surgery. The hours and days following his surgery were tough, but he gets more independent and has less pain every passing day. He’s so excited to be able to run, walk, and play without pain and without so much fatigue. This wouldn’t be possible without the extraordinary team we have and the high-quality care they provide.
The impact Nemours has had on our lives is greater than just exceptional medical care, though. On one of our first visits, Dr. Mackenzie recommended that we go to the Can-Do Playground during our downtime between appointments. We took him up on his recommendation and could not believe how wonderful that play space was for every kid, both with and without disabilities. We were so inspired that we started our own not-for-profit 501c3 organization called Adirondack Inclusion Movement. We even gave a nod to Nemours in our logo and made the ‘m’ in AIM look like people, like the people seen in the Nemours logo.
Our mission is to create accessible community spaces for people with all kinds of disabilities. Our first big project is currently underway, and we’ve chosen to start with funding and building a truly inclusive playground at Lincoln’s school. We try to visit the Can-Do Playground every time we’re in town to keep us motivated to do the hard work of bringing an inclusive playground to our little corner of Upstate New York.
If anyone is on the fence about going to Nemours because the trip or travel is too long, I assure you, it is worth it! Any length of time or travel is worth ensuring that your child or family member is getting the best care from the best medical team. We couldn’t be happier with the experiences and treatment we’ve had during what were some of the toughest moments of our lives. There are so many people at Nemours to support your family in various ways including in ways you might not even know exist! The ripple effect of Nemours has extended beyond just our family and is now creating change in our community for the better. We are forever grateful!
