When Allison was 21 weeks pregnant, she and her husband, Chris, learned that their son, Jackson, would be born with diastrophic dysplasia, a form of dwarfism. After his birth and spending 37 days in the NICU at their local hospital near their home in Virginia, they began to see specialists for Jackson’s care.
“Shortly after learning Jackson’s diagnosis, we connected online with another family whose son also has diastrophic dysplasia,” shares Allison. “They recommended we consult with the skeletal dysplasia team at Nemours Children’s. While Jackson was still in the NICU with feeding issues, we were in contact with Angie Duker, MS, CGC.” In May of 2016, when Jackson was just 3 months old, they made their first visit to Nemours Children’s Hospital, Delaware. “As diastrophic dysplasia is not as common as other types of skeletal dysplasia, we were looking to find care from medical professionals with specific and successful experience with the treatment and management of care for diastrophic dysplasia kiddos.”
Jackson’s Nemours journey began with a series of appointments and consultations, where he met a diverse and highly skilled team of medical professionals. Each visit, whether for a routine check-up or a more critical procedure, was handled with the utmost care and professionalism. Since beginning care at Nemours, Jackson has undergone a series of treatments that have been pivotal in his care. Over the years, he has had four surgeries and spent lots of time with the physical and occupational therapy teams. In January 2020, he underwent a bilateral posteromedial release on both his left and right sides. This was followed by a guided growth plate surgery in January 2023, where eight plates were inserted into both of his knees. In April 2025, Jackson had a complex series of procedures. The first involved the removal of the eight plates from both knees, while the second focused on reconstructing his dislocating patella, tendon lengthening, and osteotomy on both the tibia and fibula. Most recently, Jackson has spent June and July 2025 in inpatient rehab and participated in the CORP program, which has been instrumental in his recovery.
“When we expressed concerns and questions about Jackson’s most recent surgery and recovery plan, Dr. Stuart Mackenzie and Colleen Ditro, DNP, CPNP, listened to everything and took it all seriously,” shares Allison. They didn’t just offer a one-size-fits-all solution; instead, they provided the best workable solutions for Jackson’s specific situation. This personalized approach made a significant difference in his recovery. After surgery, “Matt McCoy, CRNA, anesthesiologists Dr. Lynda Arai and Dr. Phoebe Fisher, and Laura Mitchell from Child Life helped us and Jackson to navigate the unexpected need for weekly trips to have his surgical incision cleaned and checked,” shares Allison. “Colleen Ditro, and Bernadette Fulweiler, APN made themselves available to us by text and after hours once we were back home in Virginia. It was such reassurance and peace of mind to know that if we needed them beyond our visit/appointment times they were only a text or phone call away.”
“Jackson is often a very anxious and sensitive child, and he can be a challenging patient,” says Allison. Despite this, “Everyone who met Jackson and worked with him during his hospital stays and other visits took that in stride and did not at all make us feel like our kid was difficult. It is clear to us that the staff know how to approach kids who are scared about these big procedures and each one of them skillfully helped Jackson (and us!) navigate all the feelings and emotions to maintain the best possible outcomes with the experience.”
“Everyone from the doctors to the nursing staff, front desk folks, and even the volunteers, all aim to make your Nemours experience as easy as it can be under tough circumstances,” says Allison. “We have found that everyone does their absolute best to make sure your kiddo is as comfortable as possible. Everyone makes Jackson feel as if he is the only patient on the schedule that day and that is part of what makes Nemours so great.”
The Child Life team, including Jana, Laura, and Kim, played a crucial role in Jackson’s care. Their programming, such as music therapy, art therapy, and Wednesday bingo, have provided Jackson with much-needed distractions and joy during his hospital stays. The Clubhouse staff and the volunteers in the cafeteria also contributed to making his family’s experience as comfortable as possible. “Also, Dr. Mackenzie, Colleen, Bernadette, Mary Ellen Little, BSN, RN, Dr. Ricki Carroll, Dr. Laura Owens, Dr. Eileen Shieh, Dr. Rochelle Haas, and the great nursing staff in 3 West and in Day Medicine have taken the time to answer so many questions from Chris and I,” shares Allison. “They’ve helped to calm us down when we have been overcome by emotion or exhaustion. We truly feel seen and known and cared for by every member of the team. We love that the staff clearly loves the work they are doing and are passionate about easing the stress and burden of what can be scary and often painful experiences. They strive to not just do ‘the right thing,’ but the best thing for our child, and we are so appreciative of that approach.”
“We are hopeful that Jackson’s most recent surgery and all the support that he has received this year will give him increased mobility and independence,” says Allison. “We trust the team at Nemours and will continue to rely on them for Jacksons’ care and support as he as he grows older. We love the patient and family centered care that is a hallmark of the Nemours team.”
For other families navigating complex pediatric care, Allison emphasizes the importance of open communication and advocacy. “Ask questions and communicate your concerns, and allow your child to do the same,” she shares. “No question is too small or too annoying. You know your child best, and do not be afraid to ask for what they—or you as a family—need.” She stresses that making informed decisions is crucial. “It can be incredibly stressful to navigate care for a child that has an extraordinary condition, but the staff at Nemours will do whatever they can to help you understand their position and provide all the facts you need to make the best decision for your child. We’re always impressed with the communication between the care team, including different specialists and departments. It’s pretty seamless all the way around, which means better care for our kiddo!” Allison also notes that the team at Nemours is supportive of seeking second opinions if that’s what you feel is necessary. “They want the best for your child, and they will stand by you every step of the way. There are very kind and compassionate people at all levels at Nemours, and you cannot go wrong with the care you receive there.”
