Funding Benny's Story

$7,220 of $25,000 goal

Raised by 70 people in 21 months
  This is my brother, Benny. Benny has a rare myelin disorder which has trapped him in an unresponsive body for much of his life. As a young child, we knew something wasn't quite right... He was considered "developmentally delayed". With the aid of therapy, by the age of 5, he was just barely able to speak and walk. Aside from having to work harder to learn how to operate his legs and gain enough coordination to use the potty, his mental faculties were pretty normal. Learning was slower but Benny's mind was always sharp. His awareness and his sense of humor was always on par with my brothers and I. He never missed a joke, and still never does. He still has that infectious smile and laugh. After about the age of 7, we saw his motor functions start to degrade. It was painful to watch him struggle to learn how to walk and only a few short years later see him forced to use a walker, then crawl, and eventually lose all the independence he had worked so hard for and rely entirely on a wheelchair. As he grew the disease became more prevalent, he began to lose all motor control along with the use of his legs. He's no longer able to speak, his mouth barely able to form familiar words like "yes" and "no". While the myelin in his brain has not degenerated further, physical growth and natural changes in his body have left his mind unable to traverse the alien landscape that his body has become. He's in an adult program for those with disabilities at his high school which ends in March. He will be 21 and will have graduated into "the real world".  My goal in this documentary is to shed some light on Ben, mostly from his perspective...  who he is, our family, on-going therapy, special programs, science on this kind of disability, and most importantly share our experiences with those who have children with special needs, especially in this transitional time in his life. All donations will go toward film making expenses including travel expenses for Ben (from Rhode Island to Las Vegas and back) Donors will get a special thank you/producer credit for their loving support. -I truly feel that this is going to be the most important film I'll ever make-
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Hello Everyone!

For those of you wondering what the status is on Benny's Story (My brother's documentary)... I've taken some time off from the project to focus on some other work but I'm going to be dedicating myself in 2018 to this documentary. I expect completion by early-mid 2019.

If you can, please share :)

Thank you!
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Articles like this gives me hope that science will one day solve white matter disorders and give a better quality of life for those like our Benny :)

https://newsroom.unsw.edu.au/news/health/new-gene-therapy-developed-unsw-researchers-targets-brain-disorders
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I haven't talked about this openly until now... I'm going to be documenting Ben's medical marijuana use this upcoming weekend. Ben, as of fairly recent, uses medical marijuana in an edible form to relax his spastic muscles. This medication has drastically improved the way his body is manipulated for things like moving him in and out of bed/his power chair, toileting, and overall comfort.

The utilization of the medication has improved Ben's life in many ways.

Also, if you haven't seen it yet, please check out Ben's documentary trailer and support this GoFundMe by Tweeting and Sharing on Facebook!

Thank you!
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Here's the official early production (extended) teaser for Benny's Story.

Thank you all for your support.

Expect the full movie for Summer 2019.
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$7,220 of $25,000 goal

Raised by 70 people in 21 months
Created November 22, 2016
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$100
Anonymous
5 months ago
SD
$50
Sidne Van Deest
7 months ago

From Sidne and David. Rooting for you all!

$50
Carolyn Parker
8 months ago

Great article! White matter disease is very scary. Praying for much success in the research they are doing now.

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