My beloved sister lives everyday with the risk of death.. She wakes up everyday thinking that it can be her last day. Our parents, brother and I are constantly worried and we send her off to work everyday thinking that it can be our last time seeing her smile.
My sister is 24, she had her first Tonic-clonic seizure when she was 7 years old. While we were living in Korea, she was at home with our brother and she had a seizure while no adults were around. Thankfully, our brother was old enough to know to call 911 and she was just seconds away from brain damage due to lack of oxygen in her brain. There are so many dangers that come along with having to live with this seizure. (a list of what happens during her seizure is in one of the photos) The doctors could not identify what started my sister's seizure and ever since then, she has been living with this condition.
There were countless life threatening incidents where we were so close from losing her.
- She's had a seizure while she was swimming in the ocean and almost drowned. Thankfully our brother was able to bring her out of the water before she did.
- She had a seizure on her way down from a long staircase, fractured both her knee caps from hitting the corner of the stairs and had bruises and scraps all over her body. Miraculously, her head didn't hit the stairs and instead took the hit on her shoulders
- She had a seizure while she was out skiing but thankfully she had it while she was standing in a line to get on the gondola lift. She's quite good at skiing so she rides on the steepest slopes, and it scars me to even think that it could've happened while she was skiing down..
- She once hit her head on the corner of the bed when she collapsed in her room. I found her lying on the floor having a seizure so when I ran to embrace her head with a cloth to prevent concussion, I felt the blood on my hands.. There was no serious injury but she went through partial memory loss from concussion.
- She had a few seizures when she was working in a restaurant. She collapsed while serving hot dishes and got burned badly on her face and her arms. She decided to quit after a little while because there were too many dangerous factors.
- She also had an incident where she was making a soup and collapsed. She knocked down the pot as she fell but thankfully it was spilled on the floor next to her..
These are only just a few of out the plenty heart dropping and scaring episodes that she's gone through.. and thinking that one day, she might run out of luck and.. die in a tragic way scares me so much.. That's why she wakes up every morning with a fear of a very possible death and we worry about her constantly. She's an adventurer and naturally very outgoing. She has several different hobbies such as all kinds of sports, cooking, and out door activities but seeing her do them in the midst of fear, or not doing them at all is hard to see because I can see the sadness in her eyes even though she's smiling. She doesn't have seizures everyday, which is what makes it so ambiguous. It seems unnecessary to refrain from everything such as work and a normal life style, but yet there's always a chance of death.
Her medication which is Lamictal and Keppra has so many negative side effects, and the one she is struggling with the most is her memory loss and learning capability. How these medication works is, it "prevents epileptic fits or seizures by stabilizing excessive electrical activity in the brain. It's thought to achieve this in two ways: by reducing the activity of a natural 'nerve-exciting' agent called glutamate in the brain, and by preventing electrical signals from building up in nerve cells in the brain." and unfortunately, "Glutamate is a powerful excitatory neurotransmitter that is released by nerve cells in the brain. It is responsible for sending signals between nerve cells, and under normal conditions it plays an important role in learning and memory." Up until 7th grade, her grades were averaging mid A's and was a fast learner but the frequency of her seizure has increased so the doctor prescribed a stronger dosage. Ever since then, her grades dropped to low C's and and D's on classes that demanded heavy loads of memorization. It was heart breaking to see her break down due to her devastating grades even though she stays up all night studying. So in 9th grade, we took her to the doctors to checkout the cause of the sudden change in her cognition and the doctor said that all the side effects are inevitable since she needs a high dosage to stop from life threatening episodes from happening everyday. It was very hard for all of us to accept the sad reality for our sister and our parents' hearts were shattered. Forgot to mention earlier, but her seizures are triggered from excessive stress and lack of sleep which makes it so much harder for her to pursue good grades. She had to give up school basketball and swimming due to the possibility of physical injury and preventing her from getting further stress and lack of sleep.
Here is a link to life stories of others who suffer through the same cognition damage.
She once came back from work crying about how embarrassing and ashamed she is because of her low cognitive ability due to her medications. It's basically taking medications to slow down brain activity refraining her to be a fast learner and acute. The fact that she's trying her hardest and yet people get frustrated with her.. and how she can't simply make an excuse about her medications and get by. Her boss yells at her often because she's forgetful and is a slow learner. I can't imagine how much it would hurt to be called stupid, idiot, and ridiculous, and also hear things such as "I've told you a million times", "I'm going to need you to be smart", "can you focus/think?" It's like... nobody gives her credit for suffering through her illness in the first place because she doesn't have seizures everyday so they forget about her circumstances. Also, they aren't aware of the side effects of her medications so she doesn't have an exception. She's going through depression from being frustrated and ashamed of herself. Unable to do anything about it.
While we thought there was no other way to rescue her from the fear of not knowing when she'll have a seizure, we heard about the seizure alert dog. They are trained to sense the hormonal levels and can tell if a person is about to have a seizure or in a few hours. Then they let the person know by licking them, grabbing the phone, or barking to get help. This would improve the quality of my sister's life tremendously because she doesn't have to be in consistent fear of not knowing when she'll get a seizure. Also, she can get to a safe place and lie down before the seizure comes which saves her from all the life threatening situations that she may face. For instance, if the dog alerts her while she's cooking, she can get out of the kitchen and lie down on the bed. And when she knows that she won't be having a seizure soon, she can enjoy all of her hobbies with no fear of death.. It would also help the rest of our family not to be in consistent worry and help us all with our mental health. I think it will be the beginning of the era of pure happiness in our family. The one problem is that it takes about 2 years for a dog to be fully trained and there are more demands, therefore it's very expensive. It can cost up to $50,000 and we aren't able to afford such money all in once.. So we're hoping to at least raise about $35,000 to see if we can get our foot through the door,
This... will really be the biggest gift for our sister and it will be a gift of new life full of life and new dreams. She's always had to live a life of having to refrain from many things since 7, but if she gets this dog, she won't have to hold back anymore! or at least not live in fear from the second she wakes up everyday. Seizures can start at any age and can be caused from nothing just like my sister..
Please help our family gift a new life for our sister. We'd love to see her smile with no sadness in her eyes.