Jaxon was born on June 6th, 2011; at 34 weeks due to premature rupture of membranes. He was born via c-section and spent 1 month in the NICU. He was seen in our home from birth to age three through KIDS Program, giving him access to speech, PT, OT services. On June 25th, 2015 I was on my way to deliver my second child in Fargo, ND with my husband. Due to this, my mother took our first child, Jaxon to his well-child visit in Valley City, ND. Later that day, my mother brought Jaxon to see his new baby brother. While sitting there I asked how Jaxon's appointment went. My mother stated they wanted to refer him to another doctor, due to several cafe?' au lait spots, as well as the other continued concerns with delays in fine and gross motor that Jaxon was having. Jaxon had an MRI where the Dr stated he had multiple brain tumors and other gliomas and referred us to Dr. Mortel at the University of Minnesota. After agonizing weeks thinking there was no hope for our child, scheduling brain surgery consult in Fargo, Dr. Mortel's office called and stated at this time, there was no indication of Brain tumors and that persons with NF1 often have unexplained bright spots that show on the MRI. With trips to the University of Minnesota, Private Therapy sessions, Jaxon kept us very busy. Upon entering public school, we have had many trials. Jaxon initially didn't qualify for certain services through the education system, as fortunately for us he is healthy, doesn't miss a lot of schools, but doesn't quite meet the criteria by being far enough below the norm to fit into the needed box. As a family we continued to find sources of assistance for Jaxon to progress as other children his age. We sought out private Physical Therapy, Occupational Therapy and did a lot of at-home, hands-on learning. We continued to ask for reassessments in the school, as we felt that he should and would qualify for an IEP due to other health conditions. North Dakota does not have this option and you also must meet other criteria in order to have an IEP. In a nutshell, we needed to wait for Jaxon to fall far enough behind his peers in order to meet the criteria. As parents we did not feel that this was beneficial for our child, why should he always have to play catch up. In 3rd grade, we were finally able to meet the criteria for an IEP and continue with one now in 5th grade. This has made a difference in his learning. Jaxon with the needed support is able to maintain regular education classes with his peers and continue to grow and move through the grades with them. We have struggles daily with staying on task, organization, poor impulse control, ADHD, anxiety, and many others that are tied to his NF1 diagnosis. 2 years ago, Jaxon also received the diagnosis of scoliosis. This has continued to progress, and he has now been referred to Gillette Children's Hospital in MN for consultation. This means more time away from school, work for parents and his routine.
Jaxon now 11, active in Cub scouts, special Olympics sports (snowshoeing, track/field, bowling, basketball, volleyball). He excels at subjects that interest him (science) struggles with subjects that don't (math) and continues to love to read. He tires easily, continues to have fine and gross motor concerns which make it difficult to participate in regular sports with peers. He has built some wonderful friendships and we live in a community that supports him. Our family continues to navigate the systems to find support for him and his diagnosis in all aspects of his life from medical, educational to community living. We continue to educate those we can and bring light to a disorder that many know nothing about. We hope that by sharing just a snippet of our journey that you will support funding for Neurofibromatosis.
Original Artwork (5"x7") by Jaxon Horsager for SketchNF Spring 2023
$7 shipping charge will be added to winning bid
