Those two words are enough to strike every type of emotion in even an adult, but here we are with our amazing 13 year old facing them.
Koi Breanne has what is called schizencephaly, which she's had since before she was born. Koi is one of less than 7,000 people in the world with this condition . Clefts were formed in the right side of her brain in utero, probably due to a stroke. Unlike many people with this condition, she's very high functioning, and obviously if you've ever met her, you know she's very active and well spoken.
She's a lover of ALL things Harry Potter, running, swimming, board games, chemistry, and hanging with her family.
Koi began struggling around age 10, when we first noticed she was having episodes where she couldn't communicate and was obviously not functioning correctly. After consulting with a neurologist, she was diagnosed with schizencephaly, along with numerous other brain malformations. Her biggest issue to date is her seizures.
Koi's typical seizures aren't what you normally think of, she typically just has episodes, sometimes for hours, where she has no idea what she's doing and saying.
She has them while awake and sleeping, they are uncontrolled with medications.
She has walked into walls, walked in front of cars, done thing no one would ever want to do, and has nearly drowned because of these seizures.
That is where brain surgery comes in!
With some of the very best doctors in the country from Riley Children's Hospital in Indianapolis, we've made the decision that this is our best plan of attack for the best life possible for Koi. She has already endured week long hospital stays and days and days of testing, to ensure we are on the right path.
The first surgery will be October 17 and it will be the first time this has ever been done at Riley Hospital. (You read that right, Koi will be the first one in history to have this surgery at Riley Hospital!)
It will include placing electrodes/wires inside of her brain and placing bolts on the outside to secure them. She will go off of her medications and they will then monitor her seizure activity until they get enough data to know exactly where they are coming from. (At least a week)
At this point huge decisions will be made by Koi, us, and her doctors on what the best plan of action for surgery to remove those places will be; this could range from small insertions and burning parts to removing whole sections of her skull and physically removing portions, from what we can tell right now, it will be the later.
At this point we are looking at at least 3 weeks hospital stay, minimum.
(We will be updating the page as we know more)
So, why a GoFundMe?
We need your support!
We aren't the type of people to ever ask for help, we really aren't, but meals/food, childcare, medical bills, gas, and a loss of one of us with work for over a month is pretty huge!
We have 5 children, one of which is home schooled, and at least one of us will need to be with Koi at the hospital 24/7, then when we come home she will be on bed rest for 2 weeks and one of us will also need to be here 24/7. This means a loss of work for one of us (alternating) for at least a month.
We live in the country, where nothing delivers and we know most people live far from us, so while meals are our main concern at this point, meal train plans wouldn't work the greatest. We are planning to meal prep and do lots of freezer meals, so breakfasts, lunches, and dinners can be as easy as possible for the kids, us, and whomever else may be helping with childcare.
Gas is also a major factor, as we will be making daily drives to a from the hospital which is over an hour away in an effort to switch out help and ensure the kids get to visit as well.
We do have medical insurance, but obviously it is not covering it all either.
We also want to ensure Koi is as comfortable as possible during this process which means a wardrobe of button front shirts/PJ's and board games and books.
We want to try to make this as seamless and comfortable as possible for all of us, as just thinking about it all can feel pretty overwhelming, but we know we have every one's support.
Even just a quick share of this can have a huge impact in letting know we aren't alone and helping others be more aware of those silently suffering with conditions and illnesses you may never know about!
Please let us know if you have any questions, we'd love your support in any way possible.
Thanks so much!
<3 <3 <3
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