DeMarco Family's Journey with ALS

Hello, my name is Maggie and I am one of four daughters of Jenifer and Anthony DeMarco. Anyone who knows my parents know that they rarely, if ever, ask for help. Rather, my parents are the type of people who are always the first to give the shirt off their own backs to help others. With that being said, creating this fundraiser was a big, slightly uncomfortable, yet necessary step for our family. My hope for this fundraiser is to alleviate some of the financial burdens from my family during this challenging time and to also show my parents just how many people (family, friends, and strangers) love, care, and support them! I wish for the kindness and generosity that they always so ferociously and unconditionally pour into the world to be blessed upon them as well.

Beginning in late 2020, my dad began experiencing unusual and inexplicable symptoms that progressively worsened daily. On January 26th, 2023, following a long period of frustrating doctors appointments, exams, and tests leaving him without answers his team of doctors at the Department of Neurology at the UVA School of Medicine officially diagnosed him with amyotrophic lateral sclerosis (ALS).

The cover photo was taken at my sister's wedding in September of 2022 when my dad was still able to walk with a cane. My dad has steadily and rapidly lost mobility, requiring full-time assistance in completing most day to day tasks. In less than a year, he has become completely dependent on his family for his care and an electric wheelchair, hoyer lift, hospital bed, and countless other accommodative devices to assist in his needs.

It is heart wrenching to watch this horrific disease's rapid progression through his body but we all do our best to remain positive, celebrate small wins, and adapt to our new 'normals.'

ALS a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. ALS, also known as Lou Gehrig's Disease, is a rare neurological disease that affects motor neurons—those nerve cells in the brain and spinal cord that control voluntary muscle movement. Voluntary muscles are those we choose to move to produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. ALS has no cure and there is no effective treatment to reverse its progression. Please read the note at the bottom of the page to learn more about ALS.

I have watched my dad's health decline at a rapid rate requiring several investments in expensive medical equipment and devices, and home remodels to ensure his care, accessibility, quality of life, safety needs, etc., are being met. Being that ALS is a progressive disease, his capabilities change and diminish daily, meaning the list of 'needs' also expand daily. My dad is medically disabled and can no longer work and my mom has recently come out of work on FMLA to help be his full-time caretaker. Each of my sisters and I are contributing financially and emotionally in our own ways but the costs of what is needed is an immense burden to undertake as a family.

A study performed in 2013 showed that the estimated ANNUAL cost of care for ALS to be no less than $200,000 per patient. This devastating disease, with no known cure, is also known as the bankruptcy disease. It not only ravages your body, but also causes your family and caregivers to be burdened with the substantial costs of accessibility and care along the way. While the ALS Foundation and our health care system have provided some of the basic equipment needed, there are many things not covered. All funds raised will go directly towards my dad's health care, home care, equipment and home renovation requirements.

No contribution is too small and we are greatly appreciative of every penny donated. My hope is that, together, we can lighten the emotional toll by giving my parents and family the ability to move through this journey without as much of the financial stress and pressure. I want my parents to focus on the time they have together and for us to get the necessary things my dad needs without having money being an additional factor and stressor.

Any equipment or supplies that are purchased through donations made on this page will be donated to the ALS foundation and the local Hampton Roads ALS closet once our need for them is complete.

Thank you all so much in advance for your kindness and generosity.

ALS Info:

"ALS is a type of motor neuron disease. As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch (fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements (NIH)."