Chicago Family Being Filmed for Documentary About Ultra Rare Disease Hunter Syndrome

Oct. 12, 2012 - PRLog -- No parent ever wants to hear that their child has a rare and degenerative disease with a life span only possibly in the teens. Jason and Jamie Fowler heard those words when their now 5 year old son Jack was diagnosed with Hunter Syndrome at 16 months of age. Hunter Syndrome is believed to affect only approximately 2,000 boys in the world.

Since that time, the Fowlers have worked tirelessly to treat Jack's disease, also known as Mucopolysaccharidosis II, to try to maintain Jack's mobility and overall health as long as possible in anticipation of promising medical research. This involves about 10 specialists, regular tests, many surgeries, and a weekly 4-hour infusion.

But this summer, they were told that Jack's body was not responding to the infusion drug called Elaprase, an FDA-approved treatment for Hunter Syndrome. So in a leap of faith, the Fowlers moved from Denver, Colorado, their home for the last 16 years, to the Chicago area so that Jack could be seen by Dr. Barbara Burton, a pediatric geneticist at Lurie Children's Hospital. Dr. Burton and several other physicians worked together to develop a unique protocol involving chemotherapy and IVIG infusions to help Jack's body stop fighting off the Elaprase.

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 Howell 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 which recently received $30,000 in crowd-sourced funding through an online Kickstarter campaign.

Boys with Bigger Hearts tells the raw and honest stories of four families who face Hunter Syndrome head on. The Fowlers are one of those families. Having already filmed the Fowlers' move from Denver to Chicago, Howell will return on October 16th and 17th to film Jack's treatments and interview Dr. Burton at Lurie Children's Hospital.

To view a trailer from the film, visit http://www.boyswithbiggerhearts.org. To learn more about Jack and his journey and donate to his medical expenses, visit http://www.heresjack.com.