Abigayle Richards

Abigayle Pearl was born on August 13, 2007. She was welcomed by her parents (Dave & Jayme) and big sister, Olyvia.
At 2.5 months old, we noticed Abi would have episodes where she would wink throughout the day. We brought this to her pediatrician’s attention. At that time he told us that it was a “tick” that she had picked up, and would eventually grow out of. But, if we noticed it get worse, to let him know. So at about 5-1/2 months Abi was having one of her episodes, & it progressively got worse. She was unresponsive & in her “own little world.” We took her back to her pediatrician & he ordered an EEG & MRI to be done. It was then they found Abi had complete Agenesis of the Corpus Callosum & abnormal activity going on with her brain. To make a long story short, Abi was diagnosed with Aicardi Syndrome at 6 months old. (February 14, 2008)

When Abi was first diagnosed she was having Infantile Spasm/seizures 7+ times a day. She now has 1 to 2 a day.

Her last appointment showed that she no longer is having Infantile Spasms, but is now having Complex Partial Seizures. To us, they look just like the Infantile Spasms. But, the hypsarrhythmia that shows up on the EEG is no longer there. (Which is a good thing.)

Abi has tried several medications. Trileptal, Topamax, Vigabatrin, ACTH, & is currently on Keppra. We’re thinking that we will be trying a new medicine, as to Keppra is not helping control her seizures.

Abi has been such an inspiration to us. Because of how rare this syndrome is, Doctors aren’t able to tell us much. But she has proven us wrong.

In April 2010, Abi started walking. She not only walks, but she runs everywhere. Since she started walking, she has become more verbal. Everyday she says something new. Sometimes it sticks & other times we don’t hear her say it for a long time. But it makes us smile to hear her voice.

Abi LOVES music! She will sing, dance, twirl or sway back and forth when she hears it. She loves anything that plays music & lights up. She also loves to read or be read to. Books keep her entertained & it’s so cute to watch her read!

She attends preschool two days a week and loves being around the other children. Her favorite part is riding a bus to & from school. She has a great group of teachers & therapists that work with her at school. The staff is great at finding ways to keep her attention and use adaptive equipment so that she can participate in all aspects of school. She likes school and when she gets home she always runs in the house with a big smile on her face & twirls & jabbers.

Abi became a big sister in July 2010, when we welcomed our 3rd daughter, Sophia. It has taken some time for her to get used to, but now they have the cutest bond. She loves her sisters, & they are so good to include her in anything they do.

She is a joy to be around. She has a contagious smile that melts our hearts every time. I’m so grateful for her. Even with her challenge, she has taught us so much! I can’t imagine life without her & am so blessed to have her in our lives.

Update: 5/1/2011

Abi did not respond well to the increase of her Keppra. She was very irritable & mean. She was hitting & screaming constantly & never seemed to calm down. She was not sleeping & her seizures increased. She also was throwing up every weekend after the increase. I am happy to say that she is no longer on Keppra & is now on Zonegran, which she has seemed to respond well with. Her seizures are not daily & when she does have them they are light. She’s sleeping & sleeping through the night. She is happy & so fun to be around! She goes around saying her name over & over & giggling so much more. Her last doctors visit, the doctor mentioned getting her an iPad to see if that may help with her communication. This hasn’t been the first time the iPad has been brought up for her. When Abi is trying to tell us something, she gets really frustrated & starts screaming & hitting her head. We know she knows what she wants, but can’t seem to tell us what it is. We are in the process of saving up for an iPad & hope that when we do get her one, we will see an improvement in her speech & communication skills that her Doctors, Teachers & Therapist have all mentioned. Until then, we’ll continue to do what we have done for this long. I know she understands, I hope that one day she’ll be able to talk to us back.

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