Meet JADE McKENNEY
Hi there! My name is Jade and I am 7 ½ years old. I have a big sister and a big brother whom I love and who love me very very much. Just like Harper, I have CDKL5. It took almost two years to figure out my diagnosis. At that time (July 2006), I was one of about 20 people in the world diagnosed with this disorder! Now, I have many, many more friends sharing the ups and downs of living with CDKL5. Unfortunately, I am one of the more severely affected children who have been diagnosed.
The Ups and Downs of Living with CDKL5
Some of the problems I face include:
Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds because I suffer from gastroparesis.
I am hypotonic – I have virtually no muscle tone and I even find it difficult to hold my head up on my own.
I had surgical lengthening rods placed along my spine because I developed severe scoliosis. My first surgery was on February 20, 2012. I just had my first lengthening done this week, June 20, because I grew quite a bit already!
I have Cortical Vision Impairment (CVI) – my brain doesn’t process the images it sees. The doctors and my Mom and Dad don’t really know how or what I see because I can’t tell them.
CDKL5 Limits Everything I Can Do
I cannot talk nor communicate with gestures.
I cannot walk, nor will I ever walk.
I cannot grasp objects or use my hands for the simplest of tasks.
I cannot sit on my own.
I am choreoathetoid. I cannot control the jerky movements my arms and legs make.
This is My Greatest Challenge: I Have Life-threatening Seizures Every Day
My Mom, Dad, sister and brother take very good care of me. I am always getting hugs and kisses from someone every day! I have a dog whose name is Tebow, but I don’t let him give me kisses. Right now, I am recovering from my surgery and my back hurts a lot. Once I start feeling better, I can start my therapies again and stand in my stander.
Even though CDKL5 limits everything I can do, I am still a very calm and pleasant girl to be around. My Daddy calls me Princess and my Mom calls me Bunny. Sometimes, when I listen to music (one of my favorite things to do!), everyone calls me Jammin’ Jade. I get happier and move more when my favorite songs are playing.
I Am Counting on CDKL5 Research
I don’t like how it feels when I have seizures (which happens every day), or when I can’t see the people around me. I can’t cry, but I have fantastic hearing! I wish I could do more, see more, and not have any seizures at all. I am counting on the doctors who are interested in CDKL5 research to help find a cure, or at the very least, get rid of my seizures. If I could only cross my fingers…
Written by Jade’s mom, Kay