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Help Emiliya Fight Against ALS & Maintain Her Independence
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As some of you know, Emiliya Keyserman, the beloved matriarch of our family, was recently diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's disease. Emiliya is a truly one-of-a-kind mother (in-law), grandmother (in-law), fiercely loyal friend, and for the vast majority of her life (up until 4 years ago) was the primary caregiver for her mother (and many years ago also her father) until their passing. She is known to be one of the most selfless and generous people you will ever meet, always ready to help anyone who needs it. She was always very independent, active, with a deep appreciation for everything life has to offer. It is difficult to express how the news of this diagnosis crushed our family and those who know her and the cruelty of this disease. For someone who dedicated their whole life to taking care of others, it is now up to her family to fully care for her and prepare for what this disease will ultimately bring, which unfortunately includes complete loss of strength in her muscles/paralysis, difficulties with swallowing/eating, speaking, and eventually breathing. We have watched our vibrant, life-loving matriarch struggle with every step and fall by simply attempting to get out of bed or taking a slight turn to put her coat on. It has been a painful process to witness a person you love be robbed of their ability to do the simple things that we all take for granted every day and knowing that it will not get any easier from here...
At the time we are writing this, Emiliya's daughter is her full-time caretaker, including overnight when needed. Her daughter and son-in-law were luckily able to convert a room on the first floor of their home into a room for Emiliya, with a bathroom next door. She is currently using two separate walkers depending on the setting with supervision and we purchased a wheelchair that we can push her around in for longer distances. We have acquired a great deal of adaptive equipment recommended by physical and occupational therapy. We have joined the ALS Association and have been fortunate to be connected with a great many resources. We had an evaluation of Emiliya's daughter's home by representatives from the ALS Association revealed that Emiliya's daughter's home will need to undergo adjustments to make it accessible for Emiliya. This will include creating a safe exit from the home so that in the (near) future when Emiliya is in a motorized wheelchair full-time and no longer able to ambulate, she is still able to exit the home and be part of the community. We are currently working with the company that was recommended by the ALS Association, which specifically works with families affected by ALS. Unfortunately, the cost of making sure Emiliya will not be trapped inside the home in the future is quite high, but that is something we are dedicated to make happen. That is why we are turning to our family, friends and community for your support. Any contribution you are able to make to our goal of supporting Emiliya's independence for as long as possible is appreciated!
Thank you in advance for your time, consideration, and support!
Love,
Emiliya's Family
Fundraising team: Emiliya’s Team (2)
Anna Gershteyn
Organizer
Webster, NY
Tatyana Passero
Team member