Brodyn's Story
Meet Brodyn
Brodyn is 16 years old and is diagnosed with Attenuated intermediate NKH. Our journey began on April 2, 2008, the day he was born. Within 3 days I knew something was wrong, but the ER doctors and our pediatrician assured me he was fine and just a little jaundice. There were many other red flags in the first nine months of Brodyn‘s life, including extreme lethargy, feeding difficulties, unrecognized seizure activity, and the inability to master even the most immature milestones, but it was not until 10 months old on February 15 of 2009 that our world blew up.
That day I walked into Brodyn‘s room and he was unresponsive. Everything was wrong. His breathing was wrong. His color was wrong and by the time we reached Akron children's Hospital, Brodyn had stopped breathing. After life-saving measures, God’s Grace and 8 long days inpatient, Brodyn was responding, breathing on his own, and we were now best friends with a neurologist, and we had a seizure action plan… 2 long months later of managing 10-30 seizures a day at home, not knowing why, we finally saw a geneticist. He shared with us that, although there were some outstanding tests to confirm, he believed Brodyn had NKH. He proceeded to say he did not believe Brodyn would live to celebrate his first birthday, right around the corner. And if he did, he would not live a typical quality of life. He would not sit up, crawl, walk or talk.
I am proud to share that Brodyn sat independently at 18 months old, crawled at two, and walked 3 days before Christmas at three years old. He still faces many challenges and he is defying the odds. Today, Brodyn participates in many adapted sports, including The Challenger Baseball League. He also enjoys go karting and driving fast! And He would love to be a firefighter when he grows up.
At 15, Our days look completely different than they did in the early years. Brodyn attends a private, year long school for children with severe brain injuries. He receives all of his typical therapies as well as ABA Therapy there. He participates in martial arts multiple times a week and still loves music and art. Brodyns most challenging NKH symptoms currently manifest themselves in behavior, cognitive disabilities, gastrointestinal problems and Chorea.
Brodyn’s hard work remains an inspiration to us all and brings Joy to everyone he meets. We continue to have faith and belief that he will accomplish all things with God’s help and in His time.
