Amyotrophic lateral sclerosis, ALS, is a neurodegenerative disease that is progressive and affects nerve cells present in the brain and spinal cord.
Five thousand people are diagnosed annually with a life expectancy of two to five years.
Jenina Marik was diagnosed with ALS in March 2023.
Every day she wakes up and fights her battle for her two boys. She is now looking towards her community for the financial help in the pursuit of being “normal.”
“I just want to be a part of their memories as long as possible,” said Marik.
Marik’s ALS sympotms began back in March 2020. Excited to take on the new role of mother, she noticed how motherhood became difficult, and not in the typical sense.
The normal act of bouncing a baby up and down on her knee became strenuous and she felt as her knees weakened. What was seemingly normal in the routine of raising a child was forced to be cut out.
Every time she had to walk up stairs, she had to rely on handrails.
In June 2021 her body’s weakness became undeniable and brought to a place of concern as she couldn’t keep her flipflops on as she walked around during her vacation.
Marik sprained her ankle soon after.
The doctors told her that her recovery should be quick. Months went by and she hadn’t healed.
She was afraid to go to sleep because of the pain her foot cramps caused her.
Marik started the new year of 2022 limping. She was diagnosed with foot drop. But that wasn’t the end of it.
The doctor began to explain to Marik that she needed a nerve test. In only 10 minutes the doctors had everything they needed.
Marik was told she had nerve abnormalities in both legs.
Months of tests and doctors’ visits went by.
Marik and her husband bought their two-story dream home in Valencia in the meantime.
March of 2023 – Marik received the phone call that would change her life forever.
“I would do like, pretty much anything for it to not be ALS like anything,” said Marik. “Any disease, but that. Cancer would be better and lupus would be better. Kidney Disease would be better, like anything.”
Marik was told that she had ALS, the one disease she fought off in her mind throughout the years.
“My mind just blanked and all these people were just like moving around me in the room,” said Marik.
She bawled. She bawled for days. Sadness loomed over her new reality. Her new life.
Her old life slowly slipped away.
She started to use an electric wheelchair to get around, she could no longer drive, she had to get a wheelchair lift installed in her new home and she needed help from her husband just to use the bathroom.
Soon enough one of her sons began asking why she never came to his school anymore to volunteer.
Her eyes opened and she realized the urgency in staying present.
“I didn’t want to let him down,” said Marik.
Marik began taking him to school in her electric wheelchair, working their way through the paseos in their community.
“I think a lot of people would be like embarrassed to be in a wheelchair,” said Marik. “Worried about what people think and things like that, but I was just happy to be there for him and he was so proud of me.”
Having these moments, and continuing to, brought so much joy to her. Not only as a mother, but a mother with ALS.
Her sons adapted to seeing their mother in a wheelchair, but they began to ask when she would be out of it. She decided it was time to tell them.
“Moms always have to stay strong for their family, you never know the worries that moms have because they kind of always have to do that, behind closed doors,” said Marik. “Put on that positive face for the kids.”
Marik had a book about Stephen Hawking in her house. She grabbed the book and explained to her sons that she had the same disease as him.
“So you’re never gonna get better?” said her son.
“No, but that’s okay, because I’ll just be in a wheelchair and we’re gonna be okay,” responded Marik.
Recalling this story brought her to tears.
Throughout her ALS journey her two sons are what motivate her to do her best every day that she can.
“Just trying to keep everything as normal as possible for the kids,” said Marik.
Ashley Wolf, on behalf of Marik, started a GoFundMe page to help Marik maintain her normal for her kids, especially after using the majority of their savings to purchase their home.
All donations will go towards providing Marik with an accessible downstairs bathroom and a wheelchair van. A van that will ensure she can be there every day to pick up and drop off her kids for school.
Marik hopes that her ALS journey will open people’s eyes to the reality of people living with ALS rather than just dying because of it.
Those wishing to donate can do so at tinyurl.com/ytyfr7vw.
