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Emily and Project #EpiBear – Making a change for the better

I am pleased to introduce you to Emily. She approached Living Well With Epilepsy and asked if we would do a post on Project EpiBear. I encourage you to take a moment to learn more about this young woman who is taking on epilepsy one bear at a time. – Jessica Keenan Smith


Meet Emily

Hi! My name is Emily and I am 12, going on 13 and I have Epilepsy. When I was 5 I had my first seizure, the doctors said my brain looked good an that it may have just been a random thing. Unfortunately that was not the case. I started having more seizures every day and they were lasting 3+ minutes each.

Through the years I have been on tons of different seizure medications and combinations of seizure medications through the years. All of my seizures have always been non convulsive, but just after Christmas 2014 I had my first tonic clonic seizure. I have had 6 of those now but I’m still battling through.

The EpiBear Story

After Christmas I had an routine MRI coming up. If you’ve been in those you know they are loud and scary and you tend to be in them for a long time. I asked my mom if I could use some of my Christmas money to buy a stuffed animal that I could design. She said of course! I found one, designed it then asked her to put in the payment information, that’s when she told me that it was a UK site and the shipping would be more than the stuffed bear. We tried to find a US site but nothing was what I was looking for. My mom then said she would ask her friend if she could make it for me.

I got my #EpiBear in the mail a few weeks later and I loved it. That’s when I thought about when I had my first MRI when I was 6 and I was so scared but thankful that my dad got to sit in the room with me. I asked my mom if there was any way we could make a bunch of the bears and donate them to my hospital, UCLA. My mom loves volunteering and she said yes. She made a few phone calls and set it up with UCLA and then we went to work fundraising.

The First 100 Bears

We were able to raise $300 from friends and family to make the first 100+ bears . I started having people email me and ask if they could purchase my #EpiBears! It was crazy. I went to my mom again and asked what I should do. She said, why not make a store and sell them BUT we will use all the funds from your store to turn around and make more bears and then mail them to other hospitals all across the US that way you get more of your bears in the hands of other kids.

The Bears So Far

I have officially donated 180 bears now and have sold 20 of them. It’s such an honor to get #EpiBear out into the world. I hope that they bring a little happiness to each child or adult who gets one and reminds them they are not alone. We are in this together, we fight together and will over come this together.

Follow Emily’s Journey

You can follow my journey with Epilepsy and learn more about The #EpiBear Project on my Facebook page:

Order your own

Or order your own #EpiBear and help us get more bears into other hospitals by shopping at my store:

Thank you for reading!!


  1. Elana Kessler
    | Reply

    My four year old son recently had a form of seizure. While he was not officially diagnosed with epilepsy he went through all the same testing. We want to help on any way possible. So far we have collected toys for the epilepsy ward in our hospital but what you are doing is amazing! Please let us know what we can do!

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