Not ALS but similar. Please give my friend a voice

Gavrielle is a 46-year old woman who was diagnosed with stage four breast cancer in early 2020. It had spread into her lungs and the prognosis did not look good. But over the next year and a half, she was able to reduce the amount of cancer in her body to the point of being near cancer-free.

 

Knowing she was lucky to be alive, and knowing that the cancer had a good chance of coming back, she made plans for how she wanted to live her life, how she wanted to enjoy it and give back to the world.

 

Tragically, last summer she began to feel some strange health effects that eventually landed her in the hospital. She is suffering from a degenerative neuromuscular disease, similar to ALS but not one that has been identified. For months and months, the hospital essentially put her on hospice: no meaningful amount of physical therapy nor speech therapy. She has had her body’s mobility stripped from her, and is now in a care center where she is receiving scant access to any physical therapies. Her only desires for quality of life are independent

breath and the ability to communicate. For months now, that second need has often gone unmet. While her close family members still know what she is saying a good portion of the time, medical staff rarely do. Both need to use letter and word communication boards with her. But for anything more complex than basic physical needs, communication is so long and tedious for her that it is not possible.

 

Gavrielle holds a PhD in Hebrew Bible and in the history of religion, speaks 4 languages and can read 8. She is witty, curious, kind, and a delight to converse with. She enjoys science fiction and fantasy novels, board games, history, trashy reality tv, and so much more. Her 16 year-old daughter Diana, and her lifelong friend, former partner, and father of her child, Jeremy, have been taking care of her all this time.

They visit her every single day both in the hospital and now the care center, because without someone checking in with her whom she can communicate with, her needs are not met. Staff rarely know what she wants, and she cannot self-advocate. They would be so grateful to be able to spend those visits giving her comfort and spending quality time with her, as well as contacting more researchers to solve the

mystery of her disease, but at this time all involved must spend each visit slowly and painstakingly piecing together what her needs are.

 

Gavrielle deserves to have her voice for as long as she lives. She has been waiting for months on an eye gaze device to be cleared through her insurance, but so far there has been no decision. A cheaper alternative has been found, and so we are asking if you could contribute to the purchase of the three pieces of equipment that are needed to construct it (iPad Pro, device, and clamp arm), in order to build for her a

device that would enable her to have some semblance of a life back . With an iPad Pro and an eye gaze tracking device, she can speak to care staff with ease, text friends, play games with friends over Zoom, compose autobiographical essays, watch more than one channel on her TV set (because she doesn’t have the physical ability to touch the remote), and so much more.

 

Please help an incredible human being who has an unknown amount of time left on this earth but with so much left to do and give one of the most important things a person can have - a voice. Thank you.