Lewie is from Meta. He is 3 1/2.
Diagnosis: Prader-Willi Syndrome, Dany Walker Malformation, Neurogenic Bladder
Lewie was born with a rare genetic condition called Prader-Willi syndrome. He spent the first 66 days of his life in the NICU at MU Children’s Hospital. We received his Prader-Willi diagnosis on day ten of his life.
Lewie was on full respiratory support, and those early days were terrifying. From day one, we learned what it means to advocate. When you have a medically complex child, you can’t assume everything will be caught or handled automatically. You have to ask questions. You have to speak up. You have to make sure nothing gets missed — because your child’s life depends on it.
Through my own research and advocacy, one of Lewie’s NICU doctors, Dr. Bichianu, supported what I found and worked with the Prader-Willi clinic at Mercy Kansas City to get Lewie started on growth hormone when he was about 30 days old. Within two weeks of starting growth hormone, Lewie was off all respiratory support. It was something we once weren’t sure would ever happen. I am so deeply grateful to the entire NICU team for listening, for caring, and for helping give my son that chance.
Lewie has traveled as far as Canada and Tennessee for Dynamic Movement Therapy, and his Prader-Willi specialist is in Florida at the University of Florida. At home, he attends the Special Learning Center in Jefferson City and receives occupational, physical, and speech therapy five times a week at the SLC SKIPS Clinic.
Even with all of that, Lewie keeps moving forward. We celebrate every small victory — a new skill, a tiny step forward — because those moments mean everything to us. Lewie is a determined, resilient, strong-willed kiddo who doesn’t give up. He will make his place in this world. Honestly, it’s Lewie’s world, and we are all just along for the ride. Lewie loves Baby Shark, Nemo, and kitties. When his favorite songs come on, his whole face lights up and he starts to dance. He loves attending school with his friends, playing with his 2 kitties and 3 puppies, and spending time with his Maw Maw and Nana.
Being a parent to a medically complex child is hard in ways you don’t expect. Our days are filled with therapy appointments, doctor visits, and learning how to care for Lewie in ways we never imagined we would need to. Some days are exhausting and overwhelming.
But anyone who meets Lewie is left with a lasting impression. He is happy and takes everything in stride… unless he doesn’t want to do something — then you definitely know it. We are incredibly grateful for the people who walk this road with us. The MU Journeys team and most of Lewie’s specialists have been fantastic, and we are thankful to have pediatric specialists here in mid-Missouri who truly care about children like him. Programs like this make it possible for Lewie to get the therapy and medical care he needs to keep growing and thriving. From our family, thank you for listening, and thank you for helping children like Lewie have a chance at a healthier, happier future.
His parents are Ashley and Abbi Wilson