Give Kevin his life back.

$20,877 of $150,000 goal

Raised by 449 people in 1 month
Created November 26, 2018
I hate to do this, but we can't take this anymore. We just got back from the supermarket, where Kevin had a seizure and fell on the floor. Yes, he had his helmet on and yes, he was in the special Caroline cart. Still, he fell out of the cart and bruised his hip.

Scenarios like this are all too common for Kevin and I want him to have his life back. He can't do anything unassisted. Not even walk around his own home. He wears a helmet, but most days he has 25-50 seizures and when he falls he injures various parts of his body.

He did not start having seizures until 2015 and they pretty much went from nothing to 50 a day in just a few months. 

He has an adult shadow wherever he goes. That's no way for a 12-year-old to live. The meds he's on make him nauseous and tired and he sleeps about 12 hours a day. He's had stitches 3x due to falls from seizures (helmet was on order between fall 2 and fall 3). 

Before and after seizures:

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He carries an extremely high risk of SUDEP. SUDEP  is sudden unexplained death from seizures. I don't want to lose my boy to seizures.

The RNS device  is the only thing that gives us hope of reduced seizures . None of the other therapies work or are appropriate for Kevin.

Please note: We are in our third and final round of appeals with our insurance company Aetna. If we prevail, I stop collecting money and use what has been raised for his travel and care expenses. However, they have denied the first two appeals, and if it happens again, I want to be able to move forward asap and get a head start on the fundraising.

His quality of life is so poor and the RNS gives us hope. Kevin will likely never be seizure-free  or medication-free, but both will likely be greatly reduced with this implanted device.

I hate to ask for help like this, but we're out of options if we lose this round of appeals with Aetna.

When he goes to a place he loves (like Sesame Place), he has to wear a helmet, a gait belt and we make him sit on the ground to enjoy things so that if he falls, it's a shorter distance. 

He's just a kid who likes pizza, his dogs, running races and amusement parks, and we want him to be able to enjoy those things again.

Editing to add what Kevin's BCBA said about Kevin and this GoFundMe:
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This is from his 9-year-old brother.  I asked him to write something, I did not tell him what to say.
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Update 8
Posted by Lisa Lightner
4 days ago
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It has a been a week of ups and downs, but appears to be ending on an 'up.'

We found out some wonderful news this morning. No, not about the appeal, and I can't disclose all the details. But the news means that we will be able to reduce the amount of fundraising we have to do. By how much, that remains to be seen. But it will help, for sure.

That was our up. One of our 'downs' is our continued struggle to secure Epidiolex for Kevin. It's a new drug, just out this year. It's been our long-term plan to have the RNS surgery and use epidiolex, and used together he would have reasonable control over seizures. I won't bore you with the details, but it remains out of our reach, for now.

He also continues to just struggle with seizures. On Thursday he slept from 6 pm to 8 am Friday (he didn't have school) because he was so wiped out.

I really hope that my next update is "we're scheduling the surgery!"
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Update 7
Posted by Lisa Lightner
15 days ago
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I wanted to share this video that I came across today. That's actually Kevin's neurosurgeon in the video. It's only a few minutes long and explains the device, to give you more information on why we are raising the money.

Oh how I wish it was Kevin in that video.
http://inside.mountsinai.org/blog/eighth-episode-of-mount-sinai-future-you-features-teen-with-autism-and-implanted-device-to-stop-seizures/
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Update 6
Posted by Lisa Lightner
19 days ago
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I've declined sharing an update because there's not much to update. Kevin had an OK holiday break. I mean, he got lots of good stuff that he loves. And spent much time with friends and family enjoying the holidays.

But as usual, his days are frequently interrupted with seizures. Epilepsy doesn't take a holiday.

The campaign has stalled, so any push you could give it would be appreciated. I knew this wouldn't be easy, but didn't realize it would be this hard.
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Update 5
Posted by Lisa Lightner
1 month ago
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Whew! This is hard. I knew it would be, but we're about 3 weeks in, and not even at 10% yet.

Thank you go everyone who has donated so far.

Kevin is doing well, considering. Seizures continue to be our nemesis, but he's in good spirits. This week he had two seizures that caused injuries--a scratch on his nose and he bit the inside of his lip.

I had a friend over the other day and she said we need to put him in one of those big inflatable suits. But even that won't protect his lip.

I hope everyone has a wonderful Christmas week...and we're hoping for a Christmas miracle. Either a large donor or to receive word that it's been approved.
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$20,877 of $150,000 goal

Raised by 449 people in 1 month
Created November 26, 2018
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