Patient Spotlight: Garrett’s NF1

Garrett Dohlke

Garrett assisting another child with NF1 at the Club NF ice skating event

Our son Garrett was diagnosed with Neurofibromatosis type 1 (NF1) when he was just 5 years old. We had never heard of this disorder before, and our family was devastated. As parents, we tend to have certain dreams and expectations for our children’s lives no matter how realistic or unrealistic they may be. As I started to research this condition, I became even more scared and confused; it’s so complex and every person can be affected in such different ways.

We connected with the Washington University NF Center Clinical Program at St. Louis Children’s Hospital within a couple of months of receiving the diagnosis. Dr. Gutmann and every member of the staff there have been so kind, helpful and supportive. Our perspective began to change immediately.

We began attending the Club NF play-based therapy events, and Garrett and I have both enjoyed them so much that we try to make it to all six events throughout the year. These events are just one example of how Dr. Gutmann and his team have been so inspirational in our journey, always focused on what truly matters for our life, health and the well-being for all members of our family. Garrett has struggled with learning, balance, handwriting, speech and social skills, but he loves working on skills that are difficult for him and seeing the “NF family” at these events. He fits in there, and he has overcome many of the issues that have arisen as a result of his NF1. He struggled for years to learn how to ice skate for his love of hockey. I’m still not sure how he did it, but he plays ice hockey and loves it! He also has worked very hard in speech therapy and has discovered a love of the stage. He has performed in several small theatre productions at his school, even landing the lead role in last year’s performance of “Murder’s in the Heir”. He did a wonderful job! This year, as a freshman in high school, he is participating in the Speech and Acting club and is competing in meets all over the region. He has a terrific sense of humor, and the irony of participating in this club having been a kid who was in speech therapy most of his life has not gotten past him; go figure!

We can’t express how much gratitude we have for the Washington University NF Center Clinical Program at St. Louis Children’s Hospital and their complementary care programs for continued support in a variety of challenging situations. We are so very blessed and fortunate to be in this place. They have helped us look at all of our possibilities, and I can’t wait to see what tomorrow brings.

Written by Peggy Dohlke, proud mother of Garrett Dohlke