My name is Harper Elle Howard and I was born April 12, 2010. My family often times calls me Harperpotamus after the Christmas song “I want a hippopotamus for Christmas.” My story is only 19 months long but my experiences are many! I have traveled to Boston Massachusetts, San Rafael California twice, Orlando Florida, Houston, Fort Worth, and over 5 or 6 times to Austin/San Antonio Texas.
Why? Because my parents are trying to figure out how to help me overcome my severe developmental delay and stop my seizures. I have an extremely rare and in some cases life threatening genetic disorder known as CDKL5 disorder. There are fewer than 300 diagnosed cases worldwide and to my knowledge, mine is the only documented case with an insertion. That makes me truly one of kind! 🙂
Although I struggle my life is good! I am well cared for by supportive family and loved by many friends some of which I do not even know. My big sister, Lily, is my world! I love her oh so very much and desperately wish I could tell her that. I know I’m not the sister she thought she would have, but I hope she sees my love for her when she looks into my eyes!
I really enjoy playing with beads and the shinier the better! I also enjoy music and lights; whatever toy combines the two is the best one invented! 😉 I love the outdoors. Petey, my dog, and I enjoy looking out the window together. If I do not want to play with you I will roll to my side to ignore you. Most times this technique does not work, but I am a bit like my Mommy and feel it never hurts to try! Unlike most babies, I often times would rather not be held. I will forcefully toss my head backwards to let you know I want down or out of the chair or stroller. I am consistently being told this behavior is unacceptable, but old habits are hard to break. Even though I might not want you to hold me this does not mean I want to be alone. I like to know someone is with me. When I am happy, enjoying our play time, or proud of my effort I will stick my tongue out. This silly habit is one everyone seems to enjoy!
This time last year I was in the hospital at Medical City Dallas so my Mommy could learn to be my nurse and give me ACTH therapy shots in hopes of curing my Infantile Spasms. We were released the Eve of Thanksgiving and Mommy ran to Target, just before closing, to pick up the LAST pre-made Thanksgiving Dinner they graciously held for us.
Infantile Spasms is the type of seizures I developed with my disorder. They are brain damaging seizures that will eventually stop by the time I am 4. However, by then the damage will be done. I will then develop different types of seizures that are not as damaging but still make it difficult to learn.
Disappointingly, the ACTH treatment did not work and caused me a great deal of health problems which 9 months after stopping treatment finally returned to “normal” . The decision to try this treatment was a difficult one for my parents to make as it carries with it, despite insurance coverage, a very high price tag and the high possible side affect of death. During my treatment I was frequently monitored by my Pediatrician and Neurologist. My family had to try and keep me as isolated as possible to avoid illness in the middle of cold and flue season as my immune system was compromised due to the medication. Though this choice was hard on me and my family, I am thankful I can say with confidence my parents did EVERYTHING they thought might heal me.
I have tried a number of various anti-epileptic medications, none of which have worked to stop my seizures. I currently have anywhere from 3 to 5 a day and they can last as long as 5 minutes at a time. Despite my daily seizures, I am in a much better place than I was. In the past I have had up to 12 seizures in one day and I have had my seizures last as long as 15 agonizing minutes. Some are more painful than others. Although the seizures confuse me and sometimes hurt, my family is ALWAYS right there with me as I come in and out of awareness during them. They often times sing to me a song my Daddy made up. It comforts me hearing their voice.
“What do Harper’s dream of when they take a little Harper snooze? They dream of dirty diapers and run’in with their big sister, Lily too! Well don’t you worry your pretty little head, we’re gonna change your dirty diaper and we’ll getcha back to bed! Harper, Harper, Harper, Happy Harper, Happy Harper.”
My seizures have delayed my abilities severely, but I comprehend more than you might think. It takes me longer to process your words but given adequate time I will show you I understand. As I mentioned before I am physically 19 months old. However, my abilities are that of a 4 month old. I currently take a total of 11 pills over the course of 5 times per day.
I have therapy multiple times per day, Yoga, Aquatic, Physical and Occupational, Vision, Orientation and Mobility, and Flash Card Communication (Playwisely.com) Therapy. With all this therapy I am getting stronger, but It takes a great deal of physical and mental effort for me to “play.” Although my progress is slow it is there and for that I am thankful.
Please, walk with me by watching this attached video and add me to your Thanksgiving Day prayers!