Before I Die - Lynn

I never thought that I would be this close to death, but here I am. While I’m not the one nearing the end of my road, my best friend is. In addition to the progressive hearing loss that led to her deafness, Lynn is living with a terminal, genetic, mitochondrial disease - Leigh’s Disease. She has beat the odds at 27, as this is a disease that typically takes its victims before adulthood. Despite making it this far, the doctors believe she has about 3-8 more years for her to accomplish what she can in this life. Lynn has battled health, logistics and legal battles. These ongoing battles include endless paperwork for social security, health insurance, long-term care services, appropriate apartment accommodations, etc. all necessary as an adult living with this disease. As independent as she tries to be, Lynn spearheads most of these on her own. Her small but mighty band of friends scattered throughout the US have been attempting to monetarily help as much as possible, but as the disease strengthens its grip, the financial responsibilities rise. Funds can help with ongoing doctors visits, a power wheelchair, assistive ambulatory devices, medicines, vitamins, groceries, simple furniture, book publishing costs, and most importantly a “Forever Home.” I met Lynn her freshman year of college when her sister requested that I be her orientation leader; I knew, albeit a very small amount at the time, some sign language. I stumbled through trying to help her understand what was happening as much as I could throughout orientation. Little did I know that while struggling to communicate what page everyone was on and to interpret simple introductions, we would create a friendship that would take us to where we are today. During college, her deafness, frequent seizures, and equilibrium problems didn’t keep us from sharing laughs, Moe’s burritos, and many fond memories we will keep with us for life! They did, however, land her in the hospital. Time after time. The doctors never had a solid reason for what was happening. So, she received diagnosis after diagnosis that never actually hit the mark. It became necessary to monitor symptoms and keep her safe as possible. As she taught me and a small group of friends more and more sign language, she wanted to create an ASL club at our university. She did exactly that. She worked out the back-end logistics and paperwork to officially make it a University-recognized club, which would become her introduction and practice for endless forms required to take the reigns on the logistics of her life as this disease slowly began to take the reigns on her health. And her life. Due to the progression of her illness, she had to discontinue college, and her grandfather took on the title of caretaker. Despite his busy life on the road, “Dad,” as she calls him, attempted to learn sign language and understand what she was going through. He was there when Lynn was finally diagnosed with the extremely rare disease (1/40,000), Leigh’s Disease. It’s a mitochondrial disease that slowly affects all major systems of the body, becoming inevitably fatal. “Dad” who loved and cared for her the best he could, passed away on the other side of a hotel, bathroom door while on one of the work trips he took Lynn on. His death haunts us, but his life sprinkles joy in our memories and teaches us that small acts to understand and help the ones we love go beyond the grave. Since his death, Lynn’s been moving from house to house to apartment for the past 5 years, trying to find appropriate care and a centralized service from her necessary 10+ doctors. In 2022, her friend, Jenn, and I helped Lynn make the move from Bradenton, FL to Houston, TX. At the national center for Leigh’s Disease, the team of doctors in Houston have been working with Lynn to provide care and bring her to an appropriate way of life while she still has one to live. Her dream, before she passes in the next 3-8 years, is to publish her books and own a “forever home” that she will eventually die in. Let’s gather behind Lynn and chip away, bit by bit, at the financial burden she’s plagued with. Let’s help my best friend, Lynn, live her final years on this Earth with some more ease and comfort! I love you so much, Lynn! I will do my best to fight for you and with you!