Special Child: Averee Pierce
Averee was welcomed into the world on March 9th, 2004 weighing 8lbs 14ozs. The most precious little thing that you ever did see. Averee was a very active baby – she met all of her milestones at an early age apart from her speech, but we weren’t really too concerned about it.
Averee had her first seizure on June 21, 2007. She was at a grocery store enjoying her bag of chips and talking to everyone that she saw. It was then that Averee started stumbling; I picked her up and she was unresponsive. We took her to the hospital and it was there that they sent her in an ambulance to a bigger hospital two hours away to get checked by the pediatrician. He said Averee was fine and sent her home but she would have to go back a few days later to have an EEG.
Averee had her EEG done but we didn’t get the results until July 16, 2007. By this time Averee already had another staring spell so we knew there was something wrong. The doctor told us that she had an absence seizure. The pediatrician referred her to the Janeway Children’s Hospital. The neurologist gave Averee another EEG and it was then he diagnosed Averee with epilepsy.
The neurologist started Averee on Tegretol. After about two weeks of taking this medication, Averee began to drop to the floor. Then she developed a really bad rash and we found out she was allergic to the medication. While Averee’s condition was declining the nurse coordinator of the neurology department had mentioned Batten disease to us. We really didn’t know much about it so we researched it and decided to get her tested in March of 2008 by a skin biopsy under her arm.
On April 3, 2008 we got the most devastating news ever, something that no parent should ever have to hear – that Averee had Late Infantile Batten Disease. There is no preparation for news like this but we have learned to take it one day at a time. Since being diagnosed, Averee has lost her ability to walk, talk and is now being fed through a G-Tube. It’s heartbreaking to watch your child go through something like this.
Averee is still the happy go lucky little girl that we have always had and loved and we enjoy spending every moment with her.
To learn more about Averee, please visit Averee’s Purpose at www.avereespurpose.ca
