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Hello, my name is Trent and I am fundraising for my mom, Lisa Johns, who was diagnosed with ALS in January of 2023 at the age of 55.
Mom spent years working in the healthcare field taking care of elderly patients with diseases like Parkinson’s and Alzheimer’s. She was furthering her education to become a behavioral therapist, working full-time, and volunteering as a member of the American Legion Women’s Auxiliary to help veterans and their families in her community. During this time, her mother was diagnosed with dementia in 2015 and her father was diagnosed with lung cancer in the spring of 2016. Mom built a cabin on her parents’ homestead - her childhood home - to be closer so that she could care for her sick parents. She had to manage her work schedule to allow her to drive her father to his cancer treatments, but had to discontinue her education to fully care for both parents.
Unfortunately, her father lost his battle with lung cancer in August 2020. At that point, mom was the sole caregiver of her mother along with the 7-acre homestead. She continued to work while trying to manage home repairs, land maintenance, as well as in-home care and doctors appointments for her mother.
In November of 2020, mom contracted COVID-19 which caused her to develop an atrial fibrillation. In spite of this, she worked hard to pay for her father’s funeral expenses while caring for her mother and managing her own health problems. Then, in May of 2022, her mother suffered a fatal stroke. Mom began having concerning health symptoms on the same weekend that her mother was actively passing in the hospital. She ignored it, thinking it was just caused by grief and the stress of increasing financial burdens because of additional funeral expenses and overall upkeep of the property.
Mom’s health continued to fail. She began experiencing a severe loss of strength, slurred speech, difficulty swallowing, and fatigue. She had to stop working in September of 2022. Mom was ultimately diagnosed with ALS in January of 2023, just eight months after her mother had passed. Her ALS is very aggressive. Within four months of being diagnosed, she had to be in a wheelchair and on non-invasive ventilation at night.
Mom subsequently had to sell her childhood home in Illinois and move to South Carolina to be closer to us, as she now needed our full support. She exhausted a majority of the funds from the Illinois home sale in order to purchase an accessible home for herself and my brother, Taylor, to live in. They had to spend all of the remaining funds to build an accessible ramp and deck for her wheelchair. My brother, my sister, and I now care for her 24/7.
Unfortunately, mom still needs funds to install an accessible shower. With full paralysis becoming more imminent, it will soon be impossible for her to bathe without this. Along with this need, there are still many ongoing medical bills.
We are asking for any contributions to assist me, my siblings, and most importantly my mom with her ongoing battle with ALS.
Mom has an incredible spirit and will continue to fight. She wants to help anyone needing support with this disease. She wants to tell her story and share her journey. She isn’t sad or scared for herself, only for her family and friends for what they have to go through to help her. She actually views it as a gift from God because it is allowing her to see what is truly important in life. My mom, Lisa, wants to be an inspiration to others and continue to serve God’s purpose for her.
We will be posting videos soon on social media of funny stories, her journey, things that we are learning about the disease, and whatever may be helpful to anyone needing inspiration.
My family wants to thank you all for your support. It means the world to us.