Man this is a hard post to write. But I’ll cut right to the point – I can’t be there at Maxamania/M4X with you guis. I absolutely hate it but there’s just no way I can come this year. As some of you may have seen in the parent thread, Max has thrown us for a loop as only he can. He’s been in the hospital now for 11 days, and even if we’re home by this weekend, there’s just no way to make it work and drive 6+ hours away to golf with all of you sickos for 2 days. He’s fighting a crazy cellulitis infection (which is getting better), but it seems to have thrown off his entire system so much that he also triggered some seizures (first time in 4+ years) and then an awful GI bleed that required a transfusion and endoscopy on Monday & Tuesday. His little body is fighting so incredibly hard and I do think we’re on the upswing, but this has been quite a marathon. It’s amazing how time can stand still and yet fly by all at the same time during a hospital stay. We’ve gotten incredible care and feel like he’s on the right path. Now we just need Max to stop throwing gigantic curveballs at us! Thank you so much to all of you who have sent messages, posts, prayers, and just general good vibes our way. We are very blessed to have so many people in our corner pulling for Max.
I’m sitting here in the hospital, next to Max sitting in his bed, wearing my Maxamania I T-shirt as I type this (it’s seriously one of my favorite shirts and I love telling the story when I get asked about it), and am just crushed. This is now the 2nd time in three years I’ve had to bail on Maxamania at the last minute and I feel so guilty. The FCF and all of you guys are so incredibly generous to “adopt” Max and the GFPD as the beneficiary for this wonderful event, and it means so much that this event has continued going on 4 years now. You may not realize it, but at $2000+ for the GFPD each year (I think that’s been about the average), Maxamania probably ranks by itself in the top 10-15 of fundraisers for the organization for the entire year. We’ve been involved with the GFPD ever since Max’s diagnosis in 2015, and we’ve seen it grow and mature tremendously over that time from a scrappy organizations started by devastated parents to an influential patient advocacy group with ties to the world’s leading researchers of this disease. Events like Maxamania are a big part of that impact.
The GFPD hosts its bi-annual conference later this month in Washington, D.C., and the money raised at M4X this weekend will help pay for families and kids battling this disease to attend the conference, meet with the leading doctors and researchers studying this disorder, and even talk directly with the FDA about the need for treatments and clinical trials to help kids affected by this disease.
Whether you are playing in the event, donated raffle items, or bought raffle tickets - thank you to each and every one of you for the incredible generosity and thoughtfulness. And an extra special shoutout to @Manhattan, who has undoubtedly spent hours upon hours putting together this amazing event and hammering out every detail for a truly spectacular weekend. I know he’s got a special day in store for everyone.
I’m truly bummed I can’t be there with all of you this weekend. NLU events are the absolute best and fill up my personal tank in so many ways. I was absolutely looking forward to UM on Friday and then a truly special day on Saturday at Warren Valley with the course entirely to ourselves. Please get out there and have yourselves a day (or two for those of you playing UM), and I’ll be following along from afar with you in spirit. Hopefully by then we’re safely at home and just helping little man continue to recover to hopefully get back to himself. If any of you are ever coming through Central Illinois, please don’t hesitate to reach out and we’ll play.
Thank you and cheers,
Todd
