On a cold and blustery Chicago morning, I received a phone call that would change the fate of my family forever. Just a few days earlier, my son Joshua had undergone an MRI scan. While I considered the possible results, I had never thought the diagnosis could be something so terrible. A diagnosis of a disease that would ravage his little body bit by bit, year after year. And I can’t do anything but sit and watch it happen.
For months prior to the MRI, we had suspected something was wrong with Josh. His legs would cause him pain and tingling or numbness. He would often fall while walking or playing. The babysitter had noticed the changes in Josh. My mom noticed changes. While I wanted to pretend they were wrong, I had noticed them too. We begged his doctor for a referral to see a neurologist for months, but I was discounted as an overly concerned mom with the flat remark, “I can’t test him for EVERYTHING, mom.”
Then one day, Josh screamed in pain from the backseat of the car. I pulled over to check him but saw nothing. I took him out of the car in the dead of winter to remove his coat, but again I saw nothing. He then told me he couldn’t feel his legs. He cried and held me tight as I cried along with him.
The very next day I went to see his doctor and finally received a referral. I set up the MRI appointment and invited my sister to sit with me during the procedure. It took forever and we killed time by watching funny youtube videos. Looking back, I was so naive. I kept thinking to myself, “there is nothing wrong with my son. If there was something wrong, they would have brought me back to see him. Everything is ok.”
We left the MRI to take our daughter, Carissa, out to dinner for her 11th birthday. I told myself that life was good. Everything was as it should be. There is nothing wrong with Joshie.
The next morning I headed to St. Xavier University. I took an exam, listened to a lecture and began the walk back to my car. I needed to pick up Joshie—this was one of only a few days each week that he spent with a babysitter, just a few hours at a time. As I walked, I turned on my phone and noticed a voicemail. The neurologist’s nurse left a message asking me to call her office right away about the results. I was frozen—not from the cold winter morning but from the voicemail.
I sat in the parking lot afraid. I had never felt so alone in my life. I tried calling back but received no answer. I didn’t want to leave a voicemail. I must have called back 5 times before I panicked and decided to call Joshie’s pediatrician who had provided the referral. I begged the nurse to tell me what was going on. She placed me on hold for what seemed an eternity. Finally, the doctor got on the phone and said to me in a condescending, cold and very matter-of-fact tone, “Mrs. Flores, your son’s results show that he has what is known as leukodystrophy. There is no cure for this and he might need a spinal tap. You should make an appointment to see the neurologist to follow up. There is blood work that is needed.”
What did this man just tell me? Leuko what? What is that? I tried to get more answers but he urged me to call the neurologist. I hung up and called my sister-in-law, who worked with urologists at the time. I frantically explain what happened, desperate to get ANY information. She told me to calm down, pull over and get myself together. Then she asked me to hold on so she could ask a doctor. Several minutes went by until she finally got back on and said, ”Oh Marcie, are you sure they said leukodystrophy, Marcie? Are you sure they said that?” She started crying with me, and it was then I knew it was bad.
My baby was sick. My family would never again be the same. I eventually arrived back at home and turned on my computer. EVERYTHING I read said leukodystrophy leads to death. No cure. No medication. Losing the ability to walk, talk, and eat. The body shuts downs and well, you know the rest.
My son would never be able to be a firefighter or chef like he had dreamed of since the age of 2. Joshie will never be able to drive a car, take a girl out on a date or hold a job. Joshie will never be able to dance at his siblings weddings, go to football games with friends or fall in love. Joshie’s body will never be whole on this Earth.
This is what #leukodystrophy has done to my son, and so many kids like him.