Filmmaker Joey Howell has known for years about the debilitating effects of Hunter Syndrome since two of his cousins suffer from it. One of them passed away in 2007, which inspired Howell to create a documentary about the heartache and joys of facing life with the disease.
The film is called, "Boys with Bigger Hearts," a title that really has a double meaning; the fight and strength those with the disease have, and also because one of the symptoms of the disease is enlarged organs. Those who have Hunter Syndrome are missing an enzyme, iduronate sulfatase. Without that enzyme long chains of sugar molecules are not broken down correctly and build up in the body.
In the film Howell follows several families affected by Hunter Syndrome and what they go through on a day to day basis, "It varies between the different severities of the disease, there are some patients that are affected cognitively and some who aren't. My cousins, they aren't affected cognitively, so they mostly deal with joint pains. Obviously they're shorter in stature so they deal with different social implications of that. But then there's families who deal with boys who are affected cognitively and that's a lot more severe," explains Howell.
So far Howell has created a short film, his goal is to create a longer documentary, but he needs help with filming costs. You can see the short film and make a donation at www.boyswithbiggerhearts.org
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