#Mylesstrong. Myles Kuhlman’s Medical Bills

Hi my name is Nick Kuhlman and the father of my very special son Myles. We knew something was not medically normal with Myles from our first ultra sound. First red flags were: dilated kidneys, shortened long bones and abnormal brain ventricles. Drs could never tell us what exactly his diagnosis was all the way up birth, even after submitting blood work from whole family to 10 different panels that all came back non conclusive. Myles was born in August of 2021 and was admitted into the nicu immediately after birth for respiratory retractions where he stayed there for 5 days. Upon being released and brought home he began showing signs of extreme milestone delays and other non normal behavior from a medical standpoint. Myles has yet to be diagnosed with a medical/ genetic disease after being seen by hospitals and specialty Drs all over the country and going through: rigorous exams, MRI’s, bloodwork, testing and everything else you can think of. He has ANSD, dilated kidneys, sub clinical seizures, and no white brain matter. He is the strongest kid I know and at almost 2 years of age now we are still seeing multiple specialists around the country to find a diagnosis which would result in a treatment plan and give us an answer on how his quality of life will be. We have been told by multiple Drs that he has the first of his kind genetic disorder and unfortunately science is behind on understanding what it is and what this disorder entails. With that being said it is time to put my pride aside as all of these Drs visits, traveling to certain specialist around country, medicine, special formula, etc have put us in a hole with bills and will only continue to get worse as we still try and find a solution for him. I am asking for any help anyone can give whether it be in the form of monitory donation, advice or just keeping our little boy in your thoughts and prayers. #mylesstrong