Raising a child with cerebral palsy (CP) comes with unique challenges and triumphs. In this Q&A, Declan’s mom, Kianna, shares her family’s journey—from navigating his diagnosis to finding the right care team at Nemours Children’s Hospital, Delaware. She reflects on the impact of CP on their daily lives, the importance of expert support, and how Dr. Shrader and the CP team have given them hope for Declan’s future.
What is the most challenging part of the day for Declan?
Declan’s biggest day-to-day challenge is working around his mind-body interactions. He is a very active kid and loves to play games at recess with his friends, but his legs don’t always cooperate. He has always been able to find a way to adjust, but his competitive spirit means he gets frustrated with the limitations CP places on him.
What is Declan’s favorite part of the day?
Declan’s favorite part of the day is working with his therapy rehab team to get strong enough to go home so he can try new things his CP didn’t allow him to do before.
What has been surprising about having a child with cerebral palsy?
Kids with CP can have normal lives. To our family, Declan is no different from his big sister, or anyone else. Our son walks, runs, climbs, and jumps even though it may look different from other kids. He’s just a regular kid who has more difficulty doing tasks than others without CP. We have been most amazed at his determination and work ethic through this process. Sure, we have had bad days, but a lot more good ones where he does not let his disability deter him. We are inspired by him every day and could not be more proud of him and his ability to adapt and grow into the person he is meant to be!
What do you wish more people knew about cerebral palsy?
There are a lot of misconceptions surrounding this disability. While CP is a disability, people who have it are still incredibly capable of doing and achieving amazing things. Like everyone else, people with CP have different abilities, interests, and needs and we believe that people should focus more on their abilities rather than their disabilities. Sitting down with a person who has CP or learning one’s story will open your eyes to a new world of their capabilities.
Why is it important to find the right healthcare team for a child with CP?
CP is a complex condition, and every child has unique needs, so having the right healthcare team is essential to helping them reach their full potential. It also impacts the whole family, and having the support of an experienced team makes all the difference. At Nemours Children’s Hospital, Delaware, Dr. Shrader and the CP team have been incredible in guiding us through Declan’s journey. Honestly, Dr. Shrader is the reason we believe our son has a second chance at walking, and we are so grateful for his expertise and dedication.
What advice would you give to families with a newly diagnosed child?
Advocate. For your child, for your family, and others with CP. No matter how big or small your child’s battle with CP is, there is always space for them to grow and learn in their environment. When you advocate for others, your child will see that and learn to advocate for themselves as well.
