Michael Lajaunie Team Michael

First post: Feb 9, 2021 Latest post: Feb 1, 2022
Michael is your typical teenager who enjoys running, fishing, NASCAR, swimming, shooting airsoft guns, and being active with friends and family. He has a deep love for our country, Texas, and enjoys discussing current events. He is charismatic, intelligent, and hardworking.

At age 14, prior to the start of High School, he experienced the sudden onset of bilateral hearing loss and tinnitus the day after having an anaphylactic allergic reaction to peanuts and having self-administered an Epi Pen. At the time, we were told his bilateral hearing loss was related to a virus, so he underwent 13 rounds of Dex injections into both ears and 32 sessions of Hyperbaric Oxygen Therapy to regain hearing. After some improvement, he was fitted for his first pair of hearing aids and the school year began.

A few months later, he had ongoing issues with both of his eyes (extreme light sensitivity, excessive watering, and burning), severe worsening hearing loss, and a numbness and weakness in his feet and legs along with peripheral neuropathy progressing up his legs towards his knees. After a few visits to the emergency room and seeing countless specialists with no resolve, in December 2020 as Michael’s legs worsened he was admitted to the hospital for a two-week hospital stay where he underwent more testing, including Genetic testing and a lumbar puncture. As things seemed to stabilize, we were discharged from the hospital.

While we were awaiting genetic testing results, he began physical therapy and regained some mobility.

February 1, 2021, we heard the devastating news Michael had a rare genetic disease, Mitchell Syndrome and that his hearing loss, eye issues, and nerve degeneration were the early onset of this progressive neurodegenerative disease. Doctors have now stated it was likely triggered or “turned on” by either his allergic reaction to peanuts, the Epi Pen, or the stress of the event. We now have a team of doctors at Texas Children’s Hospital and have traveled to meet with Mitchell’s doctors and his family in St. Louis, Missouri.

Since February, Michael has been steadily improving. He has regained the ability to run and participate in sports. He is enjoying his sophomore year of High School as co-captain of his Cross Country team and playing Varsity Flag Football. He continues to have severe hearing loss.

We have an open and seemingly healthy level of communication about his illness and well-being. We’ve worked tirelessly to pursue treatment options for Michael in hopes he enjoys a long, vigorous life. He has a strong support system within our church and school, and his resilience, boldness, and perseverance inspire many to keep moving forward and live life to the fullest.

This group is being set up to follow Michael’s journey and rally around him and our family on the road ahead. We welcome prayers and support as we shine a light on Mitchell Syndrome.

-Written by Michael's Mom, Mary (September 2021)