Now that the draft is over and we’ve already moved on to arguing with ourselves about nonsense, maybe it’s time for some more details - at least from my end.
I’m still floored that Laz and JBors’ duel has chosen Max as the cause for the Welcome To The Terrordome Duel. I’m guessing almost no one here has heard of Peroxisomal Biogenesis Disorder or knows a lot about my son Max except for a few details you might have seen in the Dad Thread or on Instagram. But if all of you sickos are going to travel to Detroit (at least in part) to help out Max I might as well put it all out there:
The Cause
At 15 months old, our son Max was diagnosed with Peroxisomal Biogenesis Disorder (PBD), an extremely rare genetic disorder that only affects about 1 out of 50,000 kids. There are only a few hundred kids known worldwide with this disease. And to be frank, it sucks. It affects all parts of his body, such as his vision, hearing, muscle and bone strength, liver, kidneys, and general overall development. He also developed seizures within the last year. Max just turned 6 and he crawls and uses a wheelchair to get around. He has a feeding tube for his meals. He wears glasses and a cochlear implant. We don’t know if he’ll ever be able to walk.
When we first got the diagnosis, we were shellshocked. We knew something was going on with Max but we didn’t expect this. The geneticist didn’t exactly have the most empathetic bedside manner when delivering the news, but it sent us into a hole. Hearing your kid has a terminal disease with no cure will do that. Luckily, after a few months, my wife and I built up the courage to go to a family conference held by the Global Foundation for Peroxisomal Disorders (GFPD). At the conference we met so many other families going through the exact same path and it literally changed our lives. As I know @pushdraw, @2puttbogey, and many others with children with rare diseases can relate, sharing your experience with someone who knows exactly what you are going through can be so powerful. In short, we gained a second family. We also were connected with some of the doctors and scientists who have made it their life’s mission to research treatments and a possible cure for PBD. These doctors are incredible.
On the way home from the conference, we quickly started thinking of ways we could help advance the cause of the GFPD. We started with an online video to tell the story - this is now 4 years ago when Max had just turned 2:
After the video got some traction, we saw a chance to make an impact, so my family jumped in and we started working on a local golf outing to raise a little bit of money. My Dad and I both love golf and figured we could pull a few people together. We started out hoping to maybe get 80-100 golfers out for an afternoon. Word somehow spread and before we knew it, we had two shifts of scrambles and over 220 golfers on the course throughout the day! That was four years ago, and somehow we’ve been lucky enough to sell out all 220+ of our golf spots well in advance every year and it’s become sort of a staple community event. I dropped it in the thread earlier, but our 5th annual event will be May 14-15 in Normal, IL at Weibring Golf Club: http://www.teeitup4gfpd.com/
(To answer some earlier discussion, any/all refugees are certainly invited to the outing and i’ll definitely share our registration info here in January when we open up, but for the Duel I’d say taking over a course ourselves is a much better option. I’d like to think we put on a good event and it’s a lot of fun, but it’s no Duel. If there is somehow a desire to combine the events and people do want to come to Bloomington-Normal before or after our scramble, there’s definitely a local muni (Highland - a 5500 yard hilly Tom Bendelow course) that I think would be solid dueling ground and likely not unreasonable to take over. But Detroit sounds like Options A-F right now, as it should be.)
Anyway, we’ve gotten quite involved with the GFPD in addition to the fundraising angle. My rockstar wife is now the Chair of the Board of Directors, and it’s impressive how far the foundation has come since being founded by two parents in their free time less than 10 years ago. There isn’t any cure yet, but they’ve opened some incredible doors in the research community, including some initial progress towards an eventual gene therapy treatment. So any money raised here will be put to good use and will be helping kids like Max and families like ours. And the research is truly important. Many of the kids with PBD don’t make it past the age of 10. And I know way too many families where that reality has unfortunately hit home.
Despite all the challenges, Max is such a joy. He loves to laugh, loves his toys, and he loves being outside. He is truly the happiest, toughest little dude I’ve ever been blessed to know, and we thank God for every single day. If you want to see more of Max, just go here: http://www.teeitup4gfpd.com/max
That’s probably way more than any of you cared to know, but I can’t tell you how much I spent all day yesterday smiling once this thing started rolling. Thank you to @Lazstradamus, @JBors, @HaveOuimet, @HibernatingBear, and I’m sure a few others behind the scenes who may have suggested Max as a Duel-worthy cause. This place is awesome, and I haven’t even met everyone yet. Is May seriously another 6 months off? Can’t wait!!!
