Boys With Bigger Hearts is a documentary film exploring Hunter Syndrome, or mucopolysaccharidosis II (MPS II), through the story of three families affected by the disease. Filmmaker, Joey Howell, documented the lives of three boys living with Hunter Syndrome for six years in order to show what living with the condition is like. Hunter Syndrome is a rare disease affecting around 2,000 people.
For Joey, telling these stories about Hunter Syndrome is a deeply personal mission. Two members of his family, Tyson Cowan and Jordan Barthel, have been diagnosed with MPS II: Tyson died in 2007 at the age of 21, and Jordan, 33, lives in Arizona with his mom and stepdad. They were both a part of the human clinical trial for IV Elaprase, the only drug treatment currently approved for use to treat Hunter Syndrome. The film began in the fall of 2011 when Joey traveled to Vancouver, BC to film a fundraising gala Deb and Ryan Purcell were hosting. The following year, with the help of composer friend Patrick McGuire, Joey created a documentary short with this footage and used it to promote a Kickstarter campaign that funded most of the film. Deb had become great friends with Jamie Fowler through the online Hunter Syndrome community and introduced Joey to Jamie and Jason Fowler in 2012. The Fowlers agreed to the filming of their story starting in the summer of that year. With the help and support of a number of talented and generous friends and family Joey continued to follow these families for the next 6 years until September 2017.
Boys With Bigger Hearts tells the powerful story of living with MPS II with grace, courage and unflinching honesty.
“Honestly, I had no idea what I was getting into when I started this project. The journey of making this film has involved literal blood, sweat and tears, but the people and families I’ve had the honor of meeting and building relationships with has been one of the most fulfilling experiences of my life. My hope for Boys with Bigger Hearts is that it will help raise awareness for Hunter Syndrome and help the community move closer to finding a cure. After witnessing how these stories developed I felt a responsibility to show the disconnect that can exist between large corporations, in this case a pharmaceutical manufacturing corporation, and the people that they make their products for. It’s very heartbreaking, but an important story to tell.” - Joey Howell