My 10-year-old son, Blaze, has epilepsy and is having seizures in his sleep. We’re trying to get a seizure alert camera so I don’t have to rely on just hoping I wake up if something happens. It’s about $1,600, and right now I can’t afford that without help. If you can donate or even just help by sharing, it means everything ❤️

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Long version with all the details:

My 10 year old son, Blaze, was recently diagnosed with epilepsy after having multiple seizures in January starting around 5AM (or earlier, based on what we believe), and then a Grand Mal (tonic-clonic) seizure in February that lasted 6.5 minutes at 1AM. Both times I was already awake - once just by chance, and the second time because I had a feeling I should stay up and watch him.

Since then, he’s continued having seizures. Most recently, he had a big one while sleeping on the floor in my room and I didn’t wake up or had already been up and cleaning the house when it happened. I thought I didn’t need to watch him anymore because he was already on the “therapeutic dose” of his seizure medication. I learned very quickly about the truth to break through seizures, even though I knew about them, I made myself believe that it wouldn’t happen to Blaze once he was regulated on his meds. I was wrong.

We know it happened because he woke up soaked in sweat and urine, had bitten the inside of his cheek, and was so weak he couldn’t stand in the shower, he just sat there for nearly an hour in pain.

He spent three days in the hospital during his Spring Break, making this his third stay in six months. The first two were psychiatric due to suicidal thoughts, which has also left us wondering if seizures may have been part of all of that without us knowing. There are just so many unanswered questions.

SUDEP is now a very real fear in our home. (Please look it up!! Our neurologist told us and I can honestly say I never had a baby camera because I was scared of SIDS but if you saw what I saw you’d understand why I’m scared of SUDEP!) I do everything I can to stay up and keep watch, but I can’t stay awake forever.

Between missed work, constant appointments, bills, and everyday expenses…I’m barely keeping up. Plus keeping all of it together and every person informed I’m genuinely breaking in half with the addition of not sleeping My siblings are also trying to plan a trip to Texas in July to finally hold a memorial for our mom, who passed in November, and even that has become a financial and emotional strain because I know without help for this, I will not be able to go.

We are trying to get a seizure alert camera system. It’s around $1,600. This would mean Blaze could sleep in his own room again while still being monitored, and I would be alerted if something is wrong instead of relying on chance. It would also help us track his seizures so his neurologist can actually see what’s happening.

I hate asking for help, but right now I truly need it.

If you’re able to donate, share, or even just keep Blaze in your thoughts, it means more than I can put into words.

Thank you for reading ❤️