Keira McCloskey

Keira Mae McCloskey came into the world on July 6th 2009 at 8:02 am. She appeared to be a healthy baby girl and all the standard tests came back normal. I didn’t notice anything odd until she was a few weeks old. I had just taken her out of the bath and she held her fist out straight and stiff and her eyes appeared to flicker. This lasted for about a minute long. The doctor did not seemed concerned and said “Newborns do weird things.” So I chalked it up to weird newborn behavior and let it go. Keira was a cranky newborn and would often stiffen up, arch her back and cry for hours. The doctor’s thought that was just reflux which would pass in time. She had her first major episode at 3 months old. Her body went completely limp and her eyes rolled and flickered for a good 20 minutes. I called the doctor and this time they told me to bring her to the hospital.
For the next 5 months I brought Keira back and forth to the hospital and different doctors to try and determine what was wrong.
All the while the amount of episodes increased and lasted longer and longer. She was diagnosed with epilepsy despite the negative results from the EEG. She was prescribed Trileptal. After a few weeks of taking the medication I knew it was not working and that it had to be something other than epilepsy. Her doctor suggested doing an overnight EEG which turned into a 3 day hospital stay where Keira was hooked up continuously to the EEG monitor and underwent numerous other tests. On the third day of her hospital stay, her neurologist told me Keira had Alternating Hemiplegia of Childhood. She was 8 months old.

After I learned of her diagnosis I was devastated. It hurt to even look at Keira, I was afraid of what would happen next and of the unknown. I googled Alternating Hemiplegia and read anything and everything I could find. Even 5 years ago the information available was lacking compared to today. What I read scared me. I didn’t know if Keira would ever talk, read, play, or walk. Thanks to the AHCF I was able to reach out to other parents of children with AHC. They helped me more than any doctor ever could. After speaking with them, I realized, no one knows what the future will hold. Life may be harder than I thought it would be but also so rewarding.She began speech, occupational and physical therapy immediately. Keira began a program at a school for disabled children when she was 2-1/2. She started hippotherapy (horseback riding as therapy) at 3. Keira continued to have daily episodes until she was about 3 years old. After she began taking the drugs Flunarizine and Tamazepam, episodes decreased significantly although they are still a prevalent part of her life; Interruptions in routine, too much excitement, and heat are some of her biggest triggers.

So instead of mourning my normal baby and the life she would never have, I put all my energy into making sure Keira had every resource available so that she could reach her full potential.

She began speech, occupational and physical therapy immediately. Keira began a program at a school for disabled children when she was 2-1/2. She started hippotherapy (horseback riding as therapy) at 3. Keira continued to have daily episodes until she was about 3 years old. After she began taking the drugs Flunarizine and Tamazepam, episodes decreased significantly although they are still a prevalent part of her life; Interruptions in routine, too much excitement, and heat are some of her biggest triggers.

Today, Keira is 6 years old. Every day she wakes up with a smile on her face. She has learned to walk albeit a bit unsteadily. She talks all the time and learns a new world almost every day. Keira loves school and learning about letters and books. She is always the person in her class to say hi and give hugs to her friends. Keira loves to watch movies and will narrate them to whoever is around. Despite the hardship of her disease, she always always tries her best. It still does make me sad to see her struggle to play with other kids her age, to see her lose her balance when she tries to follow them, but she has come such a long way and accomplished things I wasn’t sure she would. I am so excited to see what else she will do.