Build My Brother a Body
Don protégé
Build my Brother a Body-
Beloveds. Grateful to be sharing this with you simply because as we share the intricacies of our lives, both joyful and painful, we come to know each other more and more. My brother, Zacharya, is an amazing human who many of you know. He has a pretty rare disease and it has hit him hardest and fastest these last five years. The disease is Ehlers Danlos Syndrome. It has led to the deterioration of his connective tissue. The implications of this effect every one of his systems. Lately, he is mostly on his back in bed and using a rudimentary wheelchair to move back and forth to bathe, etc.
There is much to be grateful for. Mostly his wife who gives everything. Who offers love and caring in ways that restore hope to hearts (and in moments breaks the heart as well).
Lately, he is looking for a wheelchair that might give him enough comfort and mobility to have more of a life with her- possibilities of venturing outside. In order to get it right for his body (he cannot fully grip with his hands and things have tendencies to dislocate/snap), it will not be as simple as pushing "Add to cart" and having it delivered. It will take some custom-doing. Just now on the phone he explained that it needs to hold up his head since his neck can't, which compresses the vertebrae and impedes brain functioning.
I won't go into all of it. Just to say, my heart is broken for my brother. He sometimes talks about passions of his and says "if I had a body, I would love that." Or, "Back when I had a body..." My hope is that, with your help, we can build him some semblance of a substitute.
Thank you so much for extending your care to include a broader family; one that includes ours.
So much love to your whole self and those you love.
- alice.
Beloveds. Grateful to be sharing this with you simply because as we share the intricacies of our lives, both joyful and painful, we come to know each other more and more. My brother, Zacharya, is an amazing human who many of you know. He has a pretty rare disease and it has hit him hardest and fastest these last five years. The disease is Ehlers Danlos Syndrome. It has led to the deterioration of his connective tissue. The implications of this effect every one of his systems. Lately, he is mostly on his back in bed and using a rudimentary wheelchair to move back and forth to bathe, etc.
There is much to be grateful for. Mostly his wife who gives everything. Who offers love and caring in ways that restore hope to hearts (and in moments breaks the heart as well).
Lately, he is looking for a wheelchair that might give him enough comfort and mobility to have more of a life with her- possibilities of venturing outside. In order to get it right for his body (he cannot fully grip with his hands and things have tendencies to dislocate/snap), it will not be as simple as pushing "Add to cart" and having it delivered. It will take some custom-doing. Just now on the phone he explained that it needs to hold up his head since his neck can't, which compresses the vertebrae and impedes brain functioning.
I won't go into all of it. Just to say, my heart is broken for my brother. He sometimes talks about passions of his and says "if I had a body, I would love that." Or, "Back when I had a body..." My hope is that, with your help, we can build him some semblance of a substitute.
Thank you so much for extending your care to include a broader family; one that includes ours.
So much love to your whole self and those you love.
- alice.
Coorganisateurs (2)
Alice Frank
Organisateur
New York, NY
Zachary Frank
Bénéficiaire
Jessie Frank
Coorganisateur