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
Deb Purcell was one of the first Hunter Syndrome parents to begin blogging her family's journey in 2006. Deb and her husband, Ryan, have been working towards raising funds to help cure Hunter Syndrome since Trey was diagnosed in 2006. If you go to their Donations Page you can give to the Hunter Syndrome Research fund. Donations given through this site are tax deductible for Canadian citizens.
Jamie Fowler started this blog in 2012, the same year we started filming to tell her son, Jack’s story. Reading through the archives of Jamie’s blog reveals honest and emotional details about their lives with Jack the last 6 years.
Simon Ibell was an inspiration and a friend that overcame his struggles with Hunter Syndrome on a daily basis to bring attention to the subject of rare disease. If you knew him, you loved him.
Project Alive is in the middle of a final push to raise 2.5 million dollars to fund a human clinical trial using gene therapy to potentially cure Hunter Syndrome. Visit the site, watch the great short films to learn more about the project and please donate if you’re able to.
The Isaac Foundation is a Toronto based advocacy organization for patients and families dealing with rare disease. When the Fowler family needed an advocate to help them fight to get Jack the drug he needed the Isaac Foundation stepped up in a big way.
The inspiration for this film comes from my family and the Hunter Syndrome community. Hunter Syndrome has been in my bloodline for a few generations. My cousin, Tyson, had Hunter Syndrome and a few years after he died (2007) I decided to pursue this project in his honor. We grew up together and he was one of my closest friends. Raising awareness about Hunter Syndrome and contributing to the effort to cure this awful disease is something I know Tyson would be proud of. I am thankful for his life, love and friendship and I miss him deeply. Jordan Barthel (33) is also a cousin of mine with Hunter Syndrome. He and his family had a part in the making of the film as well. I thank them deeply for their support. To my extended family I am sincerely thankful for their support throughout this project. The Hunter Syndrome community has also been amazing in getting behind Boys with Bigger Hearts. I value all the relationships I've built with them and without them this film would not exist. Thank you to the Kickstarter backers that trusted me to follow through on this.
I am fortunate to be surrounded by passionate and creative people with hearts as big as their skillsets. Without the talents of these great people and their dedication to tell these stories in an engaging way, this film would not be the beautiful work that it is. Some of these friends knew my cousin Tyson. Those that didn't have learned of him through the stories I've told during the course of this project. They all took great care in helping me with this delicate endeavor as well as navigate a difficult personal struggle when my wife and I lost our one year old suddenly in 2015. I cannot thank them enough for their love, support and collaboration. - Joey (Director)