Back in January of this year, my son was diagnosed with Phelan-McDermid Syndrome, a very rare genetic condition that affects his physical and mental development, especially as it relates to speech and language skills.
This has been a very difficult diagnosis for us to come to terms with. Little is known about the long-term prognosis for this condition, but what we do know is hard. It is extremely unlikely that my son will ever live independently. He may never speak at all. The life expectancy for people with his condition doesn't seem to be shortened, but there are severe medical complications that could be associated with it. Unfortunately, we just don't know.
My son is one of only 700 people worldwide to be diagnosed with Phelan-McDermid Syndrome, and with a condition that rare, information about it can be difficult to come by. My wife and I have often found ourselves in the unenviable position of explaining his condition to his doctors while trying to get help and advice on how best to care for him. We even had a doctor look his condition up on Google in the middle of our appointment in a well-meaning attempt to help us out.
There's a foundation related to his condition, and every year they hold a conference for parents and medical professionals to network, discuss recent research developments, and share stories and advice. This conference would be a fantastic opportunity for us to speak with other parents and with professionals who are more familiar with this condition than anyone we've met with to date.
Unfortunately, some unexpected and expensive car repairs torpedoed any plans we might have made. My sister-in-law has raised some money for at least my wife to attend the conference, but we're still short of what we need. My wife has started a Fundrazr page to hopefully get us the rest of the way there. If you can spare to donate even a few dollars, it could go a long way toward helping us out.
Edit: Dysplastic had a wonderful suggestion:
Popped in 10$. I think a fun way to raise money would be to have contributors vote for a game for you to have to play through and document your adventures in - a way to get back at you for all the clocking over the years, so to speak.
This is a gaming site, so why not?
I'll tell you what: I hate fun, and I hate PC games, and I hate classic PC games. So you guys pick something off GOG for me to play, and I'll record myself playing it, complete with clocky commentary for all to enjoy.
Post your suggestions in the thread.
You people are amazing. Genuinely, fantastically amazing.
Edit 2: Just over three hours after this thread went up, we surpassed our original goal of $1,500. I'm overwhelmed by the generosity of the people on this site and am honestly at a loss for words. After some prompting from members of the community, my wife and I decided to bump up the goal so that I could attend the conference, too. It's our stretch goal.
I feel double fine. Thank you all.