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The Snap Mom Community Fundraisers - Page 5 of 10 - The Snap Mom

The Snap Mom Community Fundraisers



My mom lives on a fixed income and needs help with a trip she needs to make to Long Island to have shunt surgery. She has Chiari Malformation, a brain malformation that has many complications, and shows different symptoms in different people. It’s often known as one of the “unseen ” disorders where a person who has it may appear fine on the outside, but is battling many problems and pain that we can’t always see. So many people assume that someone who has a disorder like this is faking or exaggerating, but I know personally the extremes of this problem. The Long Island Chiari institute is the best place for treatment right now in our area and that is why she needs to be there. This disorder is fairly new; it was only just discovered by a man named Arnold Chiari in the late 80s, and therefore many doctors don’t know enough about it to give proper treatment to patients diagnosed with this. If you’re wondering about it, please look it up-you’d be surprised as to the information about it. There are several types that people can be diagnosed with, including very mild types that don’t require treatment. Unfortunately, my mom wasn’t one who was diagnosed with a mild type. This may also be in part because her first brain surgery to repair it was performed by a doctor here in Syracuse NY who knew too little about this malformation and it ended up causing even more complications for her than necessary. She has been struggling with this since I was in high school and has made most of her trips alone. Thankfully there are charities that help-Angel flight takes her there and then there are earth angels who drive her to the hospital she goes to, and a house called the Variety House (similar to a Ronald MacDonald house) for her to stay in that’s inexpensive, but her doctor has moved further from the house down there, and the new hospital he practices out of is further, requiring more money for travel and lodging, as she might have to stay in a hotel near the new hospital. This will be her 24th surgery in relation to chiari and her 4th shunt surgery. She can’t work and doesn’t have a significant other to help her. Anything is appreciated. -Rachel Amaral