So here it is, my story~
My name is Haley Marina and I am 4. I have been having these terrible seizures since I was 9 weeks old. I have been diagnosed with genetic mutation known as CDKL5 for a little over two years now. I am pretty lucky though, because I have this wonderful mom who tries so hard to make my life better for me! It is Haley's World… Mommy just lives in it! She has taken me to specialists, including neurologists, gastroenterologists, orthopedics, ophthalmologists, ENTs, and dietitians. There have been many appointments in my short life. I am home bound as far as my schooling goes. I have a vision therapist, an occupational therapist, a speech therapist, and a physical therapist that come out to visit me at home. I also have a private physical therapist that I go to visit on Wednesdays. I have had many tests including numerous EEGs, MRIs, EKGs, bone scans, swallow studies, gastric emptying tests, eye scans (under anesthesia because of medication I am on for my seizures called Sabril), blood draws, x-rays, etc. - you know, the usual!
I have a black Labrador Retriever named Drake that I just love! He loves me back with big kisses and snuggles. Did I mention he alerts my mommy when I have a seizure coming? He has a license to go with me everywhere! He is my buddy. I even have a book called, "My Dog Drake" that my therapist made me.
Oh, I am a little beach bunny too! I enjoy the water and the ocean breeze. It is my favorite place to go. I live near the ocean so it makes me an extra lucky kid! I sit in my chair under the umbrella and relax! Sometimes, I sit under the pier and nap! Another place I like to go is to the Aquarium! There are huge tanks that I enjoy looking at. Some of my favorite tanks have fish of many kinds, sharks, turtles, jellyfish, seahorses, and even otters!
Five days a week, my nurse comes to my home to help my mom with my daily care. Since I require attention around the clock, she needs help! I do not speak to anyone, but my caregivers are pretty clever. They give me everything I need. My nurse and I have a great time together when my seizures allow us to. We go for strolls around the neighborhood when we have nice weather. When I am out in public, people always say, "She looks like a sleepy girl!" because I do not interact with them. But, that is always followed by a compliment on how beautiful I am!
I have tried many medications to try to get rid of these seizures. I also have a VNS (Vegas Nerve Stimulator) in my chest to help with them. When I was just a baby, I had as many as 40 seizures in a 24 hour period! It is just awful to deal with. I will be playing with my toy or relaxing on the couch with my mommy or simply trying to sleep, and BAM!..my world is rocked by this horrible feeling of helplessness, and I cannot control my body. I hold my breath for what seems to be an eternity. My entire body stiffens, then I scream and convulse. It makes me and my family sad to go through these. Currently, I have around 10-15 each day. Since I have tried a total of ten medications with no luck, my mom is putting me on the Ketogenic diet and we are going to try a cycle of steroids starting soon. I just hope this time we have some luck!
It would make my life much better if someone would just find a way to stop these seizures!!! Maybe we can raise enough money to fund some research for me and my friends! I hope that once the seizures become less frequent, I will regain some head control and some trunk control. Maybe I will even remember how to suck my bottle again or stay alert enough to eat my meals! This tube feeding business is not fun for me.
I spend about an hour every day in my supine stander to help strengthen my body. I have learned to like it! I wear ankle braces to help support my ankles in a neutral position since I do not use them to bare weight. I also have clonus in my ankles causing them to jerk uncontrollably, especially after seizures, this annoys me when I am having my toe nails painted!
That is the story of me, Little Haley Bug! I go about my life just being a precious princess! I don't let the thousands of seizures keep me down! I have HOPE, LOVE, and someday a CURE!
~”I am not afraid of tomorrow, for I have seen yesterday, and I love today.”~