December 7, 2020 is a day that will live in infamy for the Marshall family. It was on that day that Brenda was diagnosed with ALS, otherwise known as Lou Gehrig’s disease.
ALS is an incurable, fatal & progressive nervous system disease that relentlessly attacks the muscular system.
ALS is also a costly disease to care for, especially as the disease progresses.
The average person lives 2-5 years after diagnosis.
Brenda first sensed something was wrong with the dexterity of her right hand in January of 2020.
She thought she was in the best of physical health while exercising daily and ignored it as something that would go away.
Two months later, the pandemic shut everything down. With sheltering at home, there was more downtime to focus on the problem.
Suspecting carpal tunnel syndrome, Brenda’s primary doctor referred her to a hand surgeon.
X-rays and a physical exam revealed the need for EMG testing of both hands by a diagnostic specialist.
After viewing those results, the hand surgeon ordered a neck and cervical MRI done to be read by a neurologist.
The neurologist did a physical exam and ordered blood work. He subsequently wanted to do an EMG of Brenda’s arms and legs as well.
All of these doctor visits and comprehensive tests were completed by December 7, 2020.
The neurologist looked very troubled that day as he told Brenda and Steve, her husband of 41 years, “I hope I’m wrong, but I believe you have ALS.”
He wanted additional opinions from Mayo Clinic in Jacksonville and an ALS Center of Excellence neurologist in Winter Park, Florida.
Further testing, including DNA, gave the same results. The neurologist at Mayo told Brenda she had three to five years to live.
THERE IS NO CURE
ALS specifically targets and kills the motor neurons responsible for controlling the vast majority of skeletal muscles in the human body, which eventually leads to respiratory failure and death.
That brings us to today.
Brenda currently requires a walker.
She has been fitted for a scooter wheelchair that is on order.
Indoor and outdoor ramps have been secured for installation inside and outside the house.
A van with a lift for the scooter will need to be purchased.
Two weeks on and two weeks off now and for her remaining life, Brenda endures daily infusions via a port surgically installed in her chest.
Nurses administer Radicava, a fairly new drug that delays the progression of the disease.
Brenda is often called “Martha Stewart” by friends who admired her cooking and handmade crafting.
The physical creativity God blessed her with has been taken away by this horrible disease.
She can no longer prepare delicious meals, decorate beautiful cakes, or build gingerbread house mansions ever again. Brenda cannot even negotiate a knife.
She had sewn 36 masks for family and friends in the early months of the pandemic and now cannot even hold scissors. Brenda cannot button or zipper clothing.
However, Brenda focuses on what she can do. ALS has taken away Brenda’s independence, but not her faith in God or her joyful spirit.
Unfortunately, the ALS website can give you many statistics. One of those is the financial strain the disease causes the family.
It is estimated to cost $250,000 annually in its advanced stages to provide for Brenda’s care according to the ALS website.
Today we are asking you to help her family in providing this care.
We want to raise $100,000 to go towards an equipped van and care giving expenses.
Any amount you may comfortably donate is greatly appreciated.
Please feel free to share this request with anyone who may help.
Thank you for caring.
Love to all.
The Marshall Family