Our journey began on February 24th, 2017, when our beautiful baby boy, Conner, was born. A week later, I received a phone call from a pediatric neurologist from Strong Hospital stating that a newborn screening test had come back positive for adrenoleukodystrophy. She wanted to know if I had any other boys.  I did; I had a seven-year-old, Jayden, born in 2009, and a two-year-old, born in New York state in 2014. I did not understand the importance of this nor what adrenoleukodystrophy even was. I had never heard of it before. She said she wanted to see Conner and my oldest that week and advised me to google the condition. After making the appointment and ending the conversation, I googled “adrenoleukodystrophy.” My jaw dropped, and my stomach was filled with nausea. I saw horrible images of boys in vegetative states, obituaries, and basically what I had thought was my son’s death sentence. Then, the concern for my oldest son, who had not had a single MRI in his life, flooded my thoughts. Finding out that this was genetic couldn’t sink in. How could I have given my children something I had never heard of before? We met with the neurologist who tested my oldest and me since my middle was negative on the newborn screening. The results came back positive for both of us. We scheduled Jayden’s MRI shortly after, and thank God his results were clear. As scared as I was for my children, I had told myself I was going to learn everything I possibly could about this adrenoleukodystrophy and be prepared to go to battle. I put the monstrous word into Facebook to see if anything had popped up. Thankfully, it did, and I was connected to families with different experiences; some were sad, others were hopeful, and a lot were heartbreaking, but I found the love and support we needed. Eventually, the daily maintenance of hydrocortisone and semi-monthly MRIs became our normal. Trying to prepare mentally for the possible nightmare news of an ALD present MRI would never truly prepare me for the actual news of one in September 2022. It hit like

a bag of bricks. Trying to create a game plan was like a perfect storm. We didn’t know if Conner would have a match or not, but a little over a week later, the FDA approved gene therapy. It was the cushion we needed for our fall. Conner came back with no match, but we had the option of gene therapy, which we quickly took. Almost a year later, post-transplant, Conner is doing well; his disease progression has halted, and we can finally breathe. What we thought was a death sentence was the actual news we needed to save his life. Never give up hope!