My name is Lisa, and my son Austin was diagnosed with ALD when he was 19. At 16, we began to notice small changes in his gait, weight loss, fever, drop in grades, and not feeling well overall. We had many appointments with his pediatrician where he was tested for Celiac disease, mononucleosis as well as diabetes … all coming back negative, so it was chalked up to be a virus, and we were advised to let it run its course. I always had something in the back of my mind that something was not right, so at 18, his pediatrician decided to test his cortisol levels, and it all started to add up that he had Addison’s Disease. We were then sent to an internist in our small city, started on steroids, and began to be monitored. After a year and no significant improvement, we fought to be referred to an endocrinologist. After our first visit, he told us what he would be testing for, but never in my wildest dreams was ALD what we had expected to hear. Where had this terrible disease come from? We knew very little about it and how it would affect him in the future. After finding out I was a carrier, his two sisters were tested, only to find out they were also carriers. Austin appeared to have a very normal childhood. Still, he always seemed to get sicker with things, suffering unexplained febrile convulsions, bowel issues, and other health concerns that we now know were likely because of ALD. We live in Canada and know if mandatory screening for ALD were available at birth, we would have been better prepared for this disease and treatments. Austin is now 29 and cannot walk unaided or without the use of a wheelchair. He is monitored by specialists 3 hrs away from us, but to be honest, most physicians in our area have never heard of ALD. We are thankful every day that Austin is still here with us. Our biggest goal is to see more research for ALD/AMN and make screening at birth in Canada mandatory. Early treatment is so essential as a sign for parents to look for and educate doctors who will care for ALD boys and girls. Thank you, Kirsten, for all you’ve done through Conner’s Crusade to raise awareness and provide crucial information to families and our government and healthcare system to make screenings mandatory and ensure early treatment options are available to save lives. No One Fights Alone



