Our mom, Marlene, is 59 years old and has three beautiful daughters and a very active 4-year old grandson. As you can imagine her life was much like yours, busy living day-to-day and raising my family. She has worn many hats in her life including working in the school system, and as a travel agent, but above all else, the most important job that she's ever had was raising her daughters!
She absolutely love reading and considers herself a bookworm and absolutely loves spending time with family and her grandson who brightens her day whenever she has a chance to see him. Over the past eight-years our mom's life drastically with the diagnosis of Amyotrophic Lateral Sclerosis (ALS) in 2014, also known as Lou Gehrig's Disease. I know that this disease has NO cure, and I live with that reality daily.
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 with only 10% surviving more than 7 years.
After eight years of living at home, we were faced with the hard decision of finding care elsewhere for our mom. We decided that a facility would be the best place for her to receive the care and supervision she needs as the disease continues to progress. She spends most of her days in pain and loneliness due to an overwhelmed number of patients versus available staff. She is fed through a feeding tube and needs assistance to change her, brush her teeth, hair, etc., due to the inability to move her arms, hands and fingers. Having someone to assist her 2-3 times per week would help her tremendously by serving as her voice since she is unable to effectively communicate without the help of technology. The nurse assistant would also help reposition her throughout the day, which substantially helps reduce pain & progression, and will also provide her with much needed companionship during the time when family and friends are unable to visit.
Your donation will be used immediately to provide a caregiver with a livable wage 2-3 times per week, eight hours per day, while increasing her quality of life which she cherishes due to the terminal illness, ALS. Thank you for taking the time to read my story, watch our documentary by Natalia Ortiz and listen to a very heartfelt song written by Elsten Torres whose heartfelt song “Let it All Out” encapsulates the difficulty of those living with a terminal illness and those who care for us. If you are unable to donate, please share with your friends and family and help get the word out. Thank you & I appreciate you!
From our mom: "You matter, you can make a difference in my life, you all give me hope!" ❤️
How you can help Marlene:
(2) Share video and Go Fund Me with all of your friends on social media outlets and help us get the word out
(3) Use hashtag #kickingalswithmarlene
(4) Get involved!!