In the world of healthcare, finding a place that feels like home can be a challenge. For Amanda, mother of 4-year-old Mackenzie, that home is Nemours Children’s Hospital, Delaware. Mackenzie’s journey with osteogenesis imperfecta (OI) began even before she took her first breath. At just 25 weeks, Amanda learned of her daughter’s diagnosis.
“I went for a routine anatomy scan while pregnant. Significant bowing in Mackenzie’s legs and long limb measurements indicated that she would need more testing. I received an amnio and was sent to another hospital where she was diagnosed,” Amanda recalls.
Transitioning Mackenzie’s care to Nemours Children’s was a pivotal moment for their family. They discovered the facility after finding recommendations on social media. “We are part of a group on Facebook for parents of children with OI,” says Amanda. “I was asking questions when Mackenzie broke her arm at 10 days old and someone recommended we contact Nemours Children’s. We had an appointment within a couple of days of contacting.”
At Nemours, Amanda found more than just medical expertise; she found a community. From the moment they walked through the doors, the multidisciplinary team, including Dr. Jeanne Franzone; Dr. Ricki Carroll; Tina McGreal, APRN; Ashlee Malstrom, Clinical Services Specialist; and Katie Richard, Clinical Research Coordinator, embraced Mackenzie’s care.
“I would recommend Nemours to anyone that will listen,” says Amanda. “The doctors explain everything thoroughly and so I can understand. They make you feel like you’re a part of your child’s care and walk you through decisions and options. I love the fact that nurses, doctors, even the people that check you in, know the kids and not just their charts. We see people in the hallway, and they all greet her by name and will stop to talk to her.”
As they look ahead, Mackenzie and her family face the future with optimism. “We’re feeling really good about our continued care,” says Amanda. “Mackenzie is currently part of a clinical trial involving a new treatment and we have high hopes for her future.”
“Mackenzie will start kindergarten in September. She’ll continue to make friends and live a life she only can because of the care that we’ve been given at Nemours,” Amanda shares. “We plan to continue her care here for as long as they’ll have her. We would like to keep her care team for as long as we can because after four and a half years, they feel like they’re part of our family, and I couldn’t imagine Kenzie’s life without them in it.”
To other parents navigating similar journeys, Amanda offers this advice: “Utilize the community of other parents going through what you are, hang out at the playground and talk to other parents, see if there’s a Facebook group that you can post in when you’ll be at Nemours to meet up with other people. Build your village. You’re not alone.”
