My Mom has ALS and Needs Your Help

Hi, my name is Anna Gruber. I have been a 9-1-1 dispatcher for almost 10 years. I began working in Emergency Services at 17 as a volunteer EMT and have always wanted to help people. Initially that was on an ambulance, but now that is on the other end of the 9-1-1 line on the worst day of people's lives. But of all the people I have sought to help, the one person I can't help, is my mom. She has ALS, also known as Lou Gehrig's Disease. And this disease will kill her.

Amyotrophic lateral sclerosis (ALS) is a rare neurological disease that primarily affects the nerve cells responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time, attacking a person's ability to walk, talk, eat and eventually breathe. Currently, there is no cure for ALS and no effective treatment to halt or reverse the progression of the disease. The average lifespan is 2 to 5 years from onset of symptoms. This disease is very rare; at any given time there are only 30,000 people living with it in the United States.

My mom and dad brought my sister and I here in 1990, escaping the oppression of Communism in the former USSR. They uprooted their lives to bring their two babies, I was 3 and my sister was 1, to the hope of a better life. This country has provided us with everything my parents could have ever hoped for, freedoms they could have never even imagined, for themselves and their daughters.

My mom’s symptoms started in June of 2020 with slurred speech and some difficulty swallowing. What followed for the next 14 months has been the most awful and heartbreaking thing to watch. My once independent working 65-year-old mom, who cared for herself and my dad, can no longer speak, she can’t text or write, she has very little ability left to walk, she has trouble eating and drinking and her only method of communication is pointing to words or pictures or using a thumbs up for yes and a thumbs down for no.

And she needs your help, we need your help. I am starting this GoFundMe to help with the expenses of this disease because its other name is the “bankruptcy disease.” While Medicare does cover things like breathing machines, hospital beds and wheelchairs, there are still 20% co-pays on everything. And the biggest expense is home health care/aides. My mom needs someone to be with her and to help her at all times. This is not covered at all, so it is paid completely out of pocket. As of now, the weekly cost of home health aides will be around $1,500/week, and that cost may go up as time goes on, we don’t know. Both my sister and I work full time, and even though she'll be there in the evenings and on the weekends and I will be taking FMLA time to care for our mom several days a week, it’s not enough and we need help. Neither of my parents have retirement or pensions, their sole income is social security. My mom maxed out on NJ disability and doesn’t qualify for permanent disability because she didn’t work enough in the last 10 years.

Any money not used towards my mom's care will be donated in her name.