In January of 2019, my grandmother Nancy was diagnosed with ALS.

ALS, one of the most prevalent atrophy disorders, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

It is 100% fatal. 

How it works: Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action affected, patients in the later stages of the disease may become totally paralyzed. As the degeneration of the motor neurons in ALS progresses, it eventually leads to one’s death. 

Symptoms often begin with muscle twitching, weakness in a limb, or slurred speech and as the disease progresses, people may experience complications, including: breathing problems, speaking problems, eating problems, and dementia, which is a general term for a decline in mental ability severe enough to interfere with daily life. 

Within a year, my grandmother has completely lost function within her legs and is slowly losing motion within the upper portion of her body. She is also on a bipap to help inhale/exhale, as her breathing levels have dropped from a 90% to 50% within the last 6 months. 

She is currently on the drug Radicava which reduces the oxidative stress in the body and helps slow the process of the disease spreading. However, being that there is no cure for this disease, there is little information in regards to its effectiveness.  

My grandmother is beyond a role model. She was a child who lost her mother and sister to ALS, a single mother of 2, a nurse for 18 years to premature babies in the NICU at Essentia Health Hospital in Fargo, North Dakota, a sister who lost both of her brothers within 2 years, and a daughter who lost her father before receiving the diagnosis she feared most. Watching her health deteriorate these past 12 months, has been the most painful and discouraging feeling of my life. Not knowing how much time we have left together is terrifying, but we are trying our hardest to make the most of what we have. 

With that being said, the amount of expenses have added up tremendously due to the constant changing needs of this quickly progressing disease (most of which are out of pocket). Her diagnosis, drug treatments, wheelchair, transports, renovations to accommodate her living situation, etc. have impacted her financial situation greatly which is why I have decided to start this funding. I'm hoping to not only educate others about this horrible disease, but also give back to someone who has done so much out of the kindness of her heart and has shaped me into the person I am today. 

Thank you for taking your time to hear her story. Anything will help us during this difficult time. 

Sincerely, 
Joslyn