My Name is Harper Elle Howard. We met back in July 2012. You might remember me as Harperpotamus, as my family likes to call me. I am three years old and have a rare, life-threatening, non-hereditary, genetic disorder known as CDKL5 (Cyclin Dependent Kinase Like 5) Disorder.
There are fewer than 500 diagnosed cases worldwide like mine. CDKL5 consists of early onset of intense difficulty to control seizures, along with gastrointestinal, cardiological, bone, visual and developmental issues. I have been prescribed intense therapy and seizure control to aid in successful mental and physical development.
In order to help manage my seizures, I take a combination of 20 medications and supplements per day and I am on an extremely restricted diet as many foods trigger seizures for me. My diet reiterates just how much entertainment, celebrations and family gatherings revolve around food. But my family does a great job of finding activities I am able to participate in despite my complete lack of physical abilities. I am three years old, trapped in the body of an infant when it comes to skills.
Along with my usual shinny beads and musical toys, I enjoy bowling with the kid ramp, roller-skating in my wheel chair, swinging, swimming and riding ponies! I love my therapeutic riding pony named Pocket! He and my sister are my best friends! If I could bring him home I would, but Daddy says, “No pony in the house!”
Even with all my dietary and medication efforts, my seizures are not controlled. I have on average four to ten seizures per day. Regardless of my seizure activity, I attend physical, hippo, occupational, aquatic and speech communication therapy each week.
Since last July, my primary focus has been in speech communication therapy because my mommy quotes my granddaddy and tells me “We live in a world of words!” My comprehension amazes people, but with limited ability to express myself coupled with my processing delays, my mental abilities often go overlooked.
I have been working extremely hard at finding my voice by learning to use a digital eye gaze communication device. This device gives voice to what I am looking at on the screen. As my skills develop, there is potential for the device to turn into a touch screen. But should a seizure take away my physical abilities, as they have in the past, this time I WILL NEVER BE WITHOUT A VOICE!