COVID19

During COVID19 Children and Adults Still Struggle with Neurofibromatosis

The hearts and thoughts of the NF Midwest staff, board, and community are with people all over the world who are struggling with COVID19 and the financial, social, and emotional issues this worldwide crisis brings with it. Neurofibromatosis can feel like such a small concern in light of the bigger issues of today, but all the other illnesses and struggles of world still matter. While we all fight COVID19 together, NF Midwest and other nonprofits must keep their focus on their mission and the people we serve. Their problems haven’t gone away. In the midst of the COVID19 emergency NF children and adults are still fighting NF and dealing with its complications. The struggles continue and our work continues.

Just this week 7 year old Topher had surgery for a complication of NF1. He had a shunt placed in his brain in December for headaches and nausea. As COVID19 erupted he began having behavior changes and irritability. Fortunately, despite the widespread cancellations by hospitals for visits and testing, his parents and doctors kept his MRI appointment as they knew something wasn’t right. It was discovered that Topher had increased fluid on the left ventricle of his brain and accumulation of fluid in the right ventricle where the
shunt was placed.

Doctors decided to “wait and watch”.

As Topher’s behavior worsened and headaches and nausea increased a “bedside” procedure was attempted to fix the shunt.

Unfortunately, that didn’t work.

So while we sheltered at home, Topher and his family made the trek from Indiana to Chicago so that he could have surgery to replace his
shunt.

The good news is that Topher is doing much better! We hope you’re doing well too.