Give Kevin his life back.

$17,852 of $20,000 goal

Raised by 464 people in 6 months
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:


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:

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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Well, we are at one week post surgery. It's almost too good to be true. I'm afraid to say anything for jinxing it!

But we have only seen a handful of seizures since the surgery. I think I've seen 2 small blips and 1 larger seizure (10 secs or so) since we've been home. It's amazing.

On Friday we go back up to NYC to have his post-surgery visit and get the stitches removed. I will continue to post updates.

Thank you again to everyone who supported us.
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Getting closer!

Thank you to everyone who has helped and supported us. Just a few days.

And, Thursday and Friday, Kevin really struggled with dozens of seizures, requiring his rescue meds. So Wednesday cannot get here quick enough.

I'll be posting an update or two here next week. Thank you again and keep sending those positive vibes and prayers in his direction.
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March 6! It's the update we've been waiting to publish.

His surgery is now scheduled and we're making arrangements.

Of course, we're nervous that Kevin is going to undergo brain surgery, but at the same time anxious to get it over with. It has been a rough few weeks in dup15 world, with a 6-year-old dying from seizures and two other young boys (around Kevin's age) being hospitalized in ICU for uncontrollable seizures. March 6 cannot get here soon enough.

Thank you again to all who have supported us and we are working with GoFundMe to process some refunds. Unfortunately, they can only process so many per day, so it will take a few weeks. Email me if you have any questions about yours, thanks.
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Best Update EVER!

We got our appeal decision today, and Aetna's decision was overturned. They are being forced to pay for the surgery. (We did an Independent Review, which is legally binding and a provision of Obamacare.)

I will be refunding the money, just waiting for the dust to settle, but you should see it within a week or two. We were so concerned about getting the surgery paid for that we didn't realize that they're only paying for one night in the hospital and it will be the PICU. But once we figure all that out and how much we will still owe, we will begin refunding what we don't need.

Thank you, thank you, thank you to everyone who supported us. This has been a very emotional time for us and just knowing you all were there has been extremely helpful.
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$17,852 of $20,000 goal

Raised by 464 people in 6 months
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