Laura Haslam with son, Jay
(Photo Provided)

My name is Laura Haslam, and my son Jay has Neurofibromatosis type 1 (NF1). When Jay was born, we noticed a small café au lait spot on his shoulder, and initially believed it was a birthmark. By the time he was 2 months old, it had grown and others had appeared. This eventually led us to the University of Chicago, where Jay was genetically tested and given the diagnosis of spontaneous NF1. During that time, Jay was found to also have extremely high blood pressure. Thankfully, this appears to have resolved itself. Since then, Jay has been diagnosed with optic nerve gliomas on both sides, epilepsy, neurofibromas in his carotid space, and developmental delays, including dysphagia. Jay also has a mysterious boney growth along his lower jaw.

These afflictions, however, are only a small part of Jay’s story. He is a beautiful boy who cares deeply about his family, friends, and teachers. He loves Mario and dinosaurs. Jay has a sweet nature but also a fierce will. He is brave and honest, not to mention, one of the funniest people I know. We could not be prouder of the genuinely good person he is and continues to grow to be.

NF has brought a tremendous amount of fear to our lives. As time passed, we have learned to cope with this anxiety better, thanks to the amazing support system we have been lucky enough to have in our family and friends, as well as support groups like Neurofibromatosis Midwest (NF Midwest) and Jay’s incredible medical team. The day we met Jay’s neurologist, he gave us a brochure for NF Midwest and encouraged us to call. Eventually, we did and were immediately welcomed. NF Midwest has been a source of education, connection, and hope and has given us numerous opportunities to advocate.

I learned of the Neurofibromatosis Research Program (NFRP) from NF Midwest Director, Diana Haberkamp. She nominated me to be a consumer reviewer in 2021. At first, I felt a bit intimidated to participate in the peer review panel. However, during the process leading up to the panel, and the actual panel itself, I was consistently guided and supported by all involved.

Through our NF journey, there have been many times where I have felt lost and hopeless, not knowing what is to come for my sweet boy. I have been both worried that I wouldn’t catch something in time for him to be properly treated and terrified that he might be developing a life-threating tumor or that cancer could be invading one of his existing tumors.

Participating in the NFRP peer review panel has been incredibly encouraging. To see firsthand the hard work, dedication, and care that these brilliant scientists and medical professionals are putting forth to find a cure and better treatments means more to me than I could ever describe. It has given me a whole new sense of hope. I am confident that, with the help of the NFRP, these professionals will have success in their research, and for that I am eternally grateful!

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy or decision.