Recently, we received devastating news that our beloved Mari has been diagnosed with ALS. As many know, ALS is a severe degenerative disease with no known cure. If you know Mari personally, you can understand how unfathomable it is that something so unfair and undeserving could happen to such a wonderful, selfless human being.
Mari, with the help of her family and close friends, is working tirelessly to plan and prepare for what the future holds. At this point there are a ton of unknowns. One thing we are certain of though, is that life as we’ve all known it is on the brink of a massive change. With that said, we are turning to friends, family, acquaintances, neighbors, townspeople, strangers, to lend a financial hand in Mari’s well-being.
As of right now, because her ALS has presented itself as “bulbar onset” (primary symptoms in her mouth and throat), Mari has lost much of her ability to communicate verbally— what is left can be strenuous and frustrating. She has also begun to experience symptoms in her hands. As the disease progresses, Mari will require in-home, round-the-clock care, from a licensed professional. Unfortunately, insurance companies do not cover much of it. The financial implications can be catastrophic— the ALS Foundation estimates that “the financial cost to families of persons with ALS is exceedingly high. It is estimated that in the advanced stages, care can cost an average of $200,000 a year. Patients' and relatives' entire savings are quickly depleted because of the extraordinary cost involved in the care of ALS patients.”
Moreover, there will be many tools and supplies needed for purchase to aid Mari in this transition (splints, reach extenders, grab-bars, cane, walker, computerized voice synthesizers, motorized wheelchair, etc.). As of right now, we just don’t know what Mari will qualify for insurance-wise, and frankly, we don’t have much time to spare. Any and all donations would be greatly appreciated to help cover these expenses. GoFundMe requires that we set a goal, so we are putting it at $200,000.
For those who don’t know much about the magnificent Mari, she is a caring mother of three, partner of Paul (they have been together since they were teenagers and married for 33 years), and an irreplaceable friend. She has been a member of the Glen Ridge Volunteer Ambulance squad for 13 years. She donated her time to individuals going through hospice care and paid numerous visits until they ultimately passed on. She cooks meals for the needy several times a month. During the COVID crisis, she adopted senior citizens to shop and provide essentials for. Just last year, she played an integral part in her best friend’s open heart surgery process and recovery. She is a staple in so many lives. It is only fitting for those who love her, to come together in spades, and support her in any way we can. We all know she would do the same for us.
Thank you for any support you can offer her.