The story of Jaxon and Jeren

Jaxon (age 14) and Jeren (age 10) are brothers who mirror each other with genetics. Both boys have multiple gene deletions that have resulted in multiple disabilities and medical conditions. In the genetic world, research hasn’t identified and named all of the genes that are missing. There isn’t a name for this disorder and the boys are the only known humans with this combo of deletions. Both boys struggled to breathe when they were born and spent time in the NICU. It was the worst times of our lives watching each one suffocate because of closed airways. They are miracles. The boys are visually impaired with nystagmus and have ocular albinism 1, asthma, piriform aperture stenosis, sleep apnea, over stretchy muscles, bones on the left side of the body are bigger than the right, sensory neural hearing loss, ADHD, kidney issues, and other medical needs. As parents of medically complicated children living in a small rural area of South Dakota, United States of America, we learned quickly how to research, read medical research, and to advocate for our boys. It hasn’t been easy but the beauty in the miracles that we have witnessed along the way has only strengthened our Faith. Each step of the way, with 27+ specialists and medical care in SD, MN, WI, PA, nothing stops us from getting the best care for their needs. Jaxon has had 13 surgeries on his eyes/airway along with Jeren that has had 30+ surgeries- we continue to manage their symptoms to allow them to have the best life possible. Their mantra is Our disabilities do not define us! Being rare and trying to find their place among their peers is difficult. Most activities are not set up for blind/visualy impaired kids to participate and be successful. The boys understand their needs and have become their own advocates. We continue to support gene research by participating in studies to help find answers to their genetic make-up. When things get hard, we remeber where each boy started- turning blue, low oxygen levels, watching our Priest baptize our sweet little boys. Each day being Rare is truly a gift.