Our son Brodyn was born April 2, 2008. Although he was very tired and lethargic shortly after birth, the doctors were not concerned and thought it was jaundice. He began to improve and no one gave it a second thought. With the exception of some gross motor delays, Brodyn seemed to be developing like a typical child.
February 15, 2009, I walked into Brodyn’s room to wake him, and Brodyn was unresponsive. He was limp and would not open his eyes. His Father and I took him to Akron Children’s hospital and within moments, Brodyn stopped breathing and began having uncontrollable seizures. After life saving measures, Brodyn was admitted and the testing began. 8 days later and many seizures later, they still had no answers but the neurologist thought he was stable enough to go home and we were scheduled to see a geneticists in the next week. It was there that we received the news that Brodyn had NKH.
Brodyn is now 4 years old. We were told that he would never sit up, crawl, or walk. Brodyn sat up on his own at 16 months old, crawled at 18 months, and Brodyn walked 3 days before Christmas at 32 months old! Brodyn’s challenges are speech and his gross and fine motor skills but he is a hard worker. Brodyn attends speech, physical and occupational therapy weekly. He also attends horse therapy for children with developmental handicaps. He is truly inspirational.
After dealing with our new normal and meeting some very inspirational people, we founded Brodyn’s Friends, a 501c3 charitable organization designed to raise money to find a cure for NKH. We are truly blessed to have Brodyn as our son and he has inspired us to give back to others through this charitable organization. We have been blessed to come into contact with other children and families around the country and world affected with NKH that have inspired us even further. This is how Brodyn’s Friends has come to be. It is very important to us to raise money and awareness to find an eventual cure for this devastating disease so all of the money raised will go to researching that cure. We have partnered with Dr. Johan Van Hove, MD, PHD out of Colorado. He and his team of doctors are the only people in the United States currently working on researching this illness. They are doing fantastic things and we will highlight that research as new information becomes available.