PRLog - Sep. 17, 2012 - PARKER, Colo. -- DENVER, CO -- Imagine a disease so rare that there are only 2,000 possible sufferers in the world? How does one raise awareness and funds for a cure for that disease?
Two of those featured in the documentary: Trey Purcell and Simon Ibell
Filmmaker Joey Howell has known for years about the debilitating effects of the ultra rare disease Hunter Syndrome since two of his cousins suffer from it. Hunter Syndrome causes progressive physical effects such as heart and nerve damage, stiff joints, hearing loss, and restricted breathing. In most cases, it also causes progressive mental decline and challenging behaviors, as well as a shortened life span of approximately 12-15 years old.
So when Joey decided to go into film, a documentary about the heartache and joys of facing life with Hunter Syndrome came naturally. Thus began "Boys with Bigger Hearts."
Boys with Bigger Hearts tells the raw and honest stories of four families who face Hunter Syndrome head on. Two children, Jack and Trey, are cognitively affected and two men, Simon and Jordan are not, but all have faced and will continue to face significant challenges in their lives. Their stories are also ones of hope and inspiration.
Jamie Fowler, mother to Jack, is featured in the film and shares "We hope that everyone can take a moment to see and hear what it is like to sacrifice, trust, and always have hope for the future, Jack's future." Another mom featured, Deb Purcell, shares her reason for participating in the documentary:
The documentary currently is participating in a fundraising challenge called Kickstarter, where the goal is to raise at least $30,000 for filming costs. With 5 days remaining in the challenge ending at noon EDT on September 22nd, they were able to meet that modest goal, but still need additional funds for production and post-production costs. They hope that the public will get behind their mission and raise additional funds in their final 5 days of the challenge.
To view the Kickstarter campaign, visit http://www.kickstarter.com/
Boys with Bigger Hearts
19016 E. Bellisario Creek Pl.
Parker, CO 80134