In 2016, Patrick, who was 10 at the time, started sleeping like crazy. Way more than usual for a kiddo at his age, and we weren't sure what was going on. After being told it was puberty, then mono, then maybe narcolepsy, we finally got a diagnosis for Kleine Levin Syndrome in 2018.
For those of you who aren't aware, Kleine Levin Syndrome is classified as a rare neurological sleep condition. It's characterized by episodes of deep, prolonged sleep which last between 18-22 hours a day, for anywhere from 2 days to a month at a time. While in an episode, patients also lose a large amount of cognitive and memory function, and can experience hyperphagia (binge eating). There's no real treatment, except letting the patient sleep. There's no predictability to the episodes - when they'll happen or how long they'll last. When he's in an episode, it's kind of like Patrick turns into a giant toddler, and he needs help to do things like get meals, shower or remember how to do things like getting dressed.
As a result of Patrick's illness, I had to leave my job to take care of him. It's impossible to be a good employee who shows up at a job 40 hours a week, when you don't know if your kid is going to wake up on any given day. When I left my job, I started my own event/wedding planning business, but due to the nature of the biz and how far out I book clients, I'm really struggling financially right now.
I've hit the point where I need help - credit cards are maxed out, and family has given what they can. I'm so embarrassed so this is pretty much the hardest thing I've ever had to do. Funds will be used to do things like cover co-pays on medical bills, buy oil, pay the mortgage, keep the lights, phone and internet on, and buy groceries.
Anyone who knows me, knows that I believe in helping my friends, family, loved ones and community in small ways: a place to sleep during a breakup or warm place to be when you run out of oil and won't get a delivery til the next day, an extra place set at the dinner table, doing research on resources when a pal just doesn't have the spoons, etc. If there's any way I can pass on your generosity, please be assured, I'll do my best to follow up!
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