(Note:September 2017 update at bottom)
Michael Van Huffel is funny. Michael is smart. Michael inspires. But Michael is sick.
10 years ago (as of 2017) after months of deteriorating health, he collapsed and his life was never the same. Discovering that his immune, nervous and other systems had all begun failing—he was finally diagnosed with myalgic encephalomyelitis . A horrible disease often likened to living with conditions such as severe heart failure, multiple sclerosis (a common, early misdiagnosis for ME) and other quite-serious conditions.
Researchers studying this illness say it is a type of 'living death' or dauer state, a fundamental failure of the metabolic system due to stressors not fully understood. This Atlantic article lays it out—this is what he's living with, this tells the story.
He has been suffering and needs our help. Eight years ago, he moved into a 1-room studio apartment, sold off most of his—and everything has become focused on treatment and the possibility of recovery. This has included having a port placed in his heart, over a year of giving himself IV drugs daily, and many other protocols.
He has recently participated in a study run by Stanford geneticist Ron Davis, whose own son is devastatingly ill with this same disease. The study's research board includes 2 Nobel Prize winners and is the largest of its kind. (*some preliminary research results were released in July 2017 and this study has been covered in The Washington Post, among others).
To understand more about Michael's situation read on.
Before getting sick:
Michael is an award-winning designer, creative director and motion design specialist, creating album and other artwork for Prince as well as other arists, and titles/trailers for film, television and advertising. Also a musician, he attended Berklee College of Music when he was younger. Just before getting ill, he was working as Creative Director for a comapny—working in film and television—and had bought his first home in Venice (renovating on the weekends). He also was a 'Big Brother' in the Big Brother/Big Sister youth program of greater Los Angeles for 3 years prior to his life changing.
Why this campaign:
He thought, like most of us do, that he'd see a doctor, get treatment and be back to his normal life in no time.
That didn't happen for Michael. After that collapse he was unable to work and had to sell his home, car, piano—losing most of what he had built up in life. Just after having the port placed in his heart, (and just before ACH protections regarding pre-existing conditions), his insurance dropped him. This made it impossible to get new insurance for nearly two years—yet treatment had to continue. He had already incurred and paid over $230,000 in out-of-pocket medical costs before this campaign was begun.The costs involved in our healthcare system are astronomical.
On top of all of that, he still has regular bills including rent (6 years ago, after selling his home, he moved into a one-room studio aparment), food and internet (his primary connection to friends in the outside world). His life is about as bare bones as you can get. However, after 10 years in treatment, resources are running dangerously low.
What he now contends with:
Michael has intense muscle pain, flu-like immune symptoms, stomach problems, temporal lobe seizures, and sometimes just has simply blacked out. This illness hits the nervous system in various ways. He cannot currently work or drive because of his condition and can very rarely leave the house. Hard as it is to imagine he has had the equivalent of around 16-20 hours of strictly non-medical human contact (visitors) in the past years. That’s a deprivation few of us could imagine. This is not an illness that “comes and goes”, it is relentless and this has been Michael’s everyday existence for over 10 years now.
Michael has some great friends, though they are spread across the globe and are rarely able to be with him and offer that human contact he so truly needs. I know there are resources that have yet to be tapped, that could help Michael. He needs to find some comfort and support (financially and personally) as he continues his battle through treatment.
Thank you for your support,
- Jesse Hayes
August 2017 update from Michael:
Hi. I wanted to add a quick update here. This campaign was somewhat dormant after it was first launched—and I'm overwhelmed at the support. It's recently been passed around more, there are some specific goals in front of me and I am hoping this campaign can help that along.
I continue in treatment, but have had to cut down on many due to lack of funds. This has been the toughest year I've had, healthwise—in the hospital a number of times and some fairly serious complications. I have been trying to find sustainable ways to keep going, have a chance pursue treatments again, and get a safer/less expensive place to live that still affords me access to the network of specialists that I am very fortunate to have access to here.
In the hopes of continuing a creative career (but not really being able to work), I've been taking photos just in my one-room apartment—and the whole point of that endeavor is to see what work can be produced with fairly extreme limitations (and a very lo-fi setup). There has been some interest in this work, and I am doing my best to try to transform that into some kind of return to independence and personal agency.
My doctors remain emphatic that I have a genuine chance to recover if I can improve my living situation, focus on and power through some possibly rough treatments, and have contact and support day to day. I still am really very isolated, I rarely see anyone—but if I can get on my feet just a bit, I have a real chance to have day to day support (and company). I don't want to make this update too long, but I have been doing everything I can to reach that point. I am grateful beyond words for the support from people—and also want more than anything to be back on my own two feet again, with some kind of future ahead of me. And if you got this far—thank you so much for taking the time to read this.
Please share this info (gofundme.com/myfriendmichael) or simply share via the facebook and twitter links, with anyone you know that knows Michael or may be willing to offer some support.