Heather C. - Quilt Finished in 2007
Born: August 5, 1999
Illness: Intractible Epilepsy, Developmental Delay, Charcot-Marie Tooth, Hypotonia
Heather's Story
Written by Heather's mom Denae in January 2007
Heather was born on August 5, 1999. The fourth of four girls. She was an amazing little baby, she was content and loved to just be held and smile at the world. She was the perfect baby. Her red hair and blue eyes charmed everyone who came near her. She had a few odd movments and looking back those were probally seizures, back then I never thought much about them. I didn't know much about seizures and the thought never crossed my mind. It wasn't until she began daycare and they grew concerned about her in general. At nearly 2 years old she was not walking and didn't make any attempt to talk. She was still in a classroom of young toddlers, children nearly a year younger than her.
Just after her second birthday I received a call from her daycare every day for an entire week to come pick her up. When I got there she was sleeping and seemed fine each time. So I didn't worry. I didn't worry until the following week when I went to get her early and arrived to see her in the office, her whole body was shaking and it scared me to death. After what seemed like forever it stopped (in reality it was a short time) the daycare said she could not come back until she had been seen by a doctor.
That was the moment that everything changed for us.
We decided that we needed a new pediatrician. Our current doctor kept telling us not to worry about things and was putting her delays off as due to being the youngest in large family.
Decmeber 29, 2002 she was diagnosed with Epilepsy and Developmental Delay. There was a time, a short time, when her seizures were controlled. In November of 2003 we lost any seizure control and have been fighting ever sense.
Last year we found out why her need for AFO's has not dimished as was predicted when she got her first pair nearly 5 years ago. Due to some "itching" she kept having on the bottoms of her feet and hands her pediatrician sent her to have a nerve conduction study, it was then that her neurologist told us she had Charcot-Marie-Tooth.
Heather is a wonderful little girl who brings joy to those around her and teaches us daily what life is really all about.
