Help Freya Cover Epilepsy RNS Brain Surgery Costs
Donation protected
Hello everyone, if you don’t know me my name is Freya- AKA Freya Tha Goddess. I’m a very passionate individual and I make music as an outlet to show individuals that suffer from disabilities like myself that we can do anything we set our mind to and not let our health history define us! Unfortunately I had the unlucky pick of getting epilepsy and seizure disorder from the gardisil vaccine in 2009. Within 6 months of taking my first dose I started seizing. I am medication resistant to all medications except clonopin or liquid Ativan and they just aren’t sustainable to take long term given the effects nor would I be able to function at a regular job.
In 2013 I was life flighted to children’s hospital because I went into status epilepticus (I kept seizing over and over without reprieve. It’s been a very long battle that I don’t speak much about.
Fast forward to 2018- I got an offer from a neurosurgeon to have an experimental brain surgery/implant done to help reduce seizures by up to 65% over the course of a few years. I got the NeuroPace RNS surgery and within 6 months was over 90% healed in my seizures my quality of life improved and I was able to get my drivers license!!! I was the first person in the US to have this device implant for my type of epilepsy and I’m grateful I took that leap! The battery lasted quite longer than it was expected and now it has died and I’ve been left with the aftermath.
I’m having another surgery 02/01/2024 and will be laid off from work for a month or so depending on the healing process… and this was very unexpected. The battery will last at least another 10-15 years thankfully (plenty of time to plan for this). I now have to cover insurance costs, bills, transportation from surgeries and visits to get my stitches removed and it’s a very overwhelming time for me.
If you can find it in your heart to donate toward my cause please feel free to do so! I thank and love all of you. I will keep everyone updated along the way
In 2013 I was life flighted to children’s hospital because I went into status epilepticus (I kept seizing over and over without reprieve. It’s been a very long battle that I don’t speak much about.
Fast forward to 2018- I got an offer from a neurosurgeon to have an experimental brain surgery/implant done to help reduce seizures by up to 65% over the course of a few years. I got the NeuroPace RNS surgery and within 6 months was over 90% healed in my seizures my quality of life improved and I was able to get my drivers license!!! I was the first person in the US to have this device implant for my type of epilepsy and I’m grateful I took that leap! The battery lasted quite longer than it was expected and now it has died and I’ve been left with the aftermath.
I’m having another surgery 02/01/2024 and will be laid off from work for a month or so depending on the healing process… and this was very unexpected. The battery will last at least another 10-15 years thankfully (plenty of time to plan for this). I now have to cover insurance costs, bills, transportation from surgeries and visits to get my stitches removed and it’s a very overwhelming time for me.
If you can find it in your heart to donate toward my cause please feel free to do so! I thank and love all of you. I will keep everyone updated along the way
Organizer
Madeline Hearn
Organizer
Pittsburgh, PA