Joey Howell followed us on our trip to UNC this month, to film Trey’s tenth intrathecal dose of Elaprase, for his documentary Boys with Bigger Hearts. Joey has a family history of MPS II and because of what that means (just ask him about his uncle or cousins), was moved to make a documentary about this progressive and rare disease. He is from Denver, Colorado, and found out about us through our Once Upon a Cure gala last September. He filmed our gala and we met him for the second time when he flew up to Vancouver last Wednesday, to film our trip to UNC. Because of the rarity of the disease, I don’t often have a chance to hear many perspectives on MPS, so it was both wonderful and heart-wrenching to hear his stories growing up close to two cousins with MPS II.
It has also been equally wonderful and exhausting, to participate in his film. Joey’s vision is to tell the stories of a few families who live with MPS II Hunter Syndrome, masks off. Yes, they are stories of hope, growth, unity, community, love and life. But they are also stories of devastation, crushed dreams, destroyed and struggling relationships, love and death. I am SO excited about the possibility of what this doc might do for research and a cure, and it is also cathartic, to think that maybe, just maybe, more people might be able to understand just a piece of what we live through, but re-living diagnosis is not remotely enjoyable. And neither is sharing thoughts, words, and actions you would have preferred to bury.
On the flip-side however, at the moment, we have a pretty good gig going on. Trey hasn’t had any recent surgeries. We haven’t received any bad news. Trey is on IV and IT Elaprase with no noticeable adverse effects. His LP’s and general anesthetics are going smoothly. We’ve adjusted to trial life and the trips are shorter. Trey is growing and learning. Watching your child going under general anesthetic isn’t easy, and finding childcare and booking flights and changing timezones every few weeks (while you try to find a way to convince your local hospital to infuse an experimental drug via lumbar puncture into your child) isn’t ideal, but compared to what we’ve been faced with, it’s peanuts.
Anyways, enough emotion for today. Tomorrow I get to go to an MPS conference in Boston where I will meet families for the first time whom I’ve been sharing my soul with for years. I absolutely can’t wait and I absolutely know I’ll collapse when I get home. Ryan, thank you for continuing to be on the receiving end of these. Thank you for sticking with me through the muck.
Dose #10 complete. Joey, thank you for being a part of this trip. I’ll never forget it.
You can follow Joey and his documentary, Boys with Bigger Hearts, on Twitter: @joeyhowell and @BiggerHearts and on his website: http://boyswithbiggerhearts.org/
