Boys With Bigger Hearts

MPS II (Hunter Syndrome) is a rare degenerative disease.  Boys With Bigger Hearts is a documentary film dedicated to telling the stories of a few families and individuals affected by this devastating disease in a beautiful and honest way.

2000 people worldwide live with MPS II (or Hunter Syndrome). This film tells the raw and honest stories of four boys affected.

We launched a Kickstarter campaign to secure some short term funding to produce the full length documentary. This documentary has the potential to help increase MPS II awareness and support our end goal to find a cure for MPS II.

In the end we hope this film will help raise awareness and educate people about MPS II. By raising awareness we can support the cause to find a cure.

Melissa & Case Hogan share with Patient Commando

In 2009, my then 2-year old son Case was diagnosed with a rare disease called Hunter Syndrome. It is a progressive and degenerative disease that attacks all of the body systems and usually leads to lifespan of only 12-15 years old.

Later that year, he was in the hospital for several procedures including tonsil removal and the placement of a port-a-cath for weekly infusions. It was after these surgeries that he ended up in the PICU because of airway problems. Those were incredibly sobering days. But, you can’t live with sadness 24-hours a day, even in the PICU.

After several days in the PICU, when it seemed as if Case was on the upswing, I collected my “30 Pieces of Hospital Wisdom.” It was that return to writing after the emotional time of his initial diagnosis that would later lead me to start a blog chronicling his journey, Here is my wisdom:

Packing only one change of clothes does not actually make for a shorter hospital stay. Socks don’t really start smelling until you’ve worn them for the third day. Not the second, the third. You really can curl your hair using a compact mirror propped on top of a soap dispenser. Curling your hair while listening [...] continue the story

Trey Purcell & MPS II

Trey Arthur Cehak Purcell was born 19 minutes away from the leap year on March 1, 2004, his due date. Labour began early Saturday morning with Trey finally arriving in the wee hours of Monday, after a long and awesome labour. During the first hours of my labour, Ryan and I ate, went for walks, watched movies and anticipated the birth of our first baby. We were so excited. Trey’s birth was originally planned to be at home, but 35 weeks into my pregnancy, Trey was found to have a Premature Ventricular Contraction (PVC). Although it was not serious, we were no longer comfortable giving birth at home. Trey was welcomed into the world at B. C. Children and Women’s Hospital. Birthday March 1st, 2004 Height 21 inches Weight 8 lbs 14 oz Life after Trey was born was great. Actually, it was the best time in my adult life. Watching Trey grow and just watching him see life for the first time was so amazing. Everything was new and fascinating. At first it was watching butterflies, feeling new textures, learning to crawl and walk. Still now, nothing could be better than being a mom. We continue to play and explore – feeding squirrels [...] continue the story

Pursuing my calling

Ever since I can remember I have been of the mindset that I have been given Mucopolysaccharidosis (MPS) II Hunter Syndrome for a higher purpose. A gift in many ways. I know it sounds strange to call a genetic progressive (and extremely rare) disease a gift. But that is how I honestly feel. The life I have been given – the experiences, opportunities, people I have met, and friendships I have made (and continue to each and every day) is amazing. I know it’s the person that ultimately creates the life they want to live, but MPS II Hunter Syndrome is part of me. I don’t think I would have had the experiences and live this amazing life if I did not have this painful disease. Of course, MPS II Hunter Syndrome provides many struggles, but to be honest I think the good has outweighed the bad. I am not saying there haven’t been tough days – trust me I have had many and will continue to do so. For those who know me though I don’t live a life where my disease defines me, but rather I believe my disease is just part of me. I truly believe this [...] continue the story