Zack Weinberger Support Fund
Donation protected
Zack Weinberger is a 2017 graduate of Noble High School. He is 6’0”, though his thick brown curly hair adds another inch-and-a-half or so. But don’t let his thin, lanky frame and his smile that reeks of “imp” fool you. Zack is definitely not your typical 18-year-old boy—but he desperately wants to be. Zack has a rare brain disorder called Lafora body disease , which causes mild to severe seizures, sometimes as many as 100 in a single day. This disease is terminal and will claim his life in several years.
Originally diagnosed at nine with Occipital Lobe Epilepsy Zack’s symptoms increased, progressing at an ever more rapid pace during the last few years. In response to that, a more comprehensive genetic test was performed 2 years ago to reveal Lafora - no one was looking for something so rare - only 200 patients in the world - and it had gone undiagnosed.
Despite 5 different medicines to treat Zack's seizures, they are still occurring on a daily basis. Today Zack is wheelchair bound, he cannot feed himself, or care for any of his daily needs.He requires daily nursing care, a need which is desperately hard to find, sometimes making it impossible for Zack's parents to work.
Zack's parents are divorced but each are trying desperately: to be care givers to Zack even as his needs become greater than their abilities; to inspire him to continue pushing forward; to be parents to their other two children; to not become buried under the mounting medical bills, many of which are not covered by insurance, to say nothing of their regular household expenses—dad working hard to do his share and mom working three part-time jobs to do hers. And then there is the emotional toll on everyone.
Anything you can do to help this family would be deeply and gratefully appreciated as they struggle to maintain some sense of a normal life for themselves and for Zack and his two sisters. Zack is not your typical teenager, his future will not include college, or marriage, or the joys of fatherhood some day, but maybe we can make the rest of his days mean something. Maybe while we protect and nurture the rest of his days, we'll also inspire those who know him to live their days with purpose- -to be giving, thankful, loving and generous people with the gift of life they themselves were given. Please consider helping Zack and his family.
Thank you for your support.
Originally diagnosed at nine with Occipital Lobe Epilepsy Zack’s symptoms increased, progressing at an ever more rapid pace during the last few years. In response to that, a more comprehensive genetic test was performed 2 years ago to reveal Lafora - no one was looking for something so rare - only 200 patients in the world - and it had gone undiagnosed.
Despite 5 different medicines to treat Zack's seizures, they are still occurring on a daily basis. Today Zack is wheelchair bound, he cannot feed himself, or care for any of his daily needs.He requires daily nursing care, a need which is desperately hard to find, sometimes making it impossible for Zack's parents to work.
Zack's parents are divorced but each are trying desperately: to be care givers to Zack even as his needs become greater than their abilities; to inspire him to continue pushing forward; to be parents to their other two children; to not become buried under the mounting medical bills, many of which are not covered by insurance, to say nothing of their regular household expenses—dad working hard to do his share and mom working three part-time jobs to do hers. And then there is the emotional toll on everyone.
Anything you can do to help this family would be deeply and gratefully appreciated as they struggle to maintain some sense of a normal life for themselves and for Zack and his two sisters. Zack is not your typical teenager, his future will not include college, or marriage, or the joys of fatherhood some day, but maybe we can make the rest of his days mean something. Maybe while we protect and nurture the rest of his days, we'll also inspire those who know him to live their days with purpose- -to be giving, thankful, loving and generous people with the gift of life they themselves were given. Please consider helping Zack and his family.
Thank you for your support.
Organizer
Mike Weinberger
Organizer
Berwick, ME
