Luke's Tuberous Sclerosis Page
Cole's Story |
 Robert "Cole" Elliott was born on February 11, 1994. Now three years old, Cole has started preschool. He takes medicine three times a day for seizure control and is mostly seizure free. In addition to Speech Therapy he received at school, he takes additional therapy at the University of Southwestern Louisiana. He is quite happy, and he loves to sing in his nonverbal way and play outside. When Cole was two months old, we noticed he made very little eye contact, and he always wanted to be held. On my oldest son's fifth birthday, we saw the most frightening symptoms in Cole; his face turned read and his body went limp. We went directly to our pediatrician. Of course, by the time we arrived at the pediatrician's office, Cole was kicking and cooing as if nothing happened. Later that same afternoon, he experienced what we know now to be more seizure-like activity; his lips turned a different color and his whole appearance seemed strange. We took him to the Emergency Room and spent the next seven days in the hospital. The doctors did a CAT scan, where they discovered numerous brain tumors. Two months later, we received the diagnosis of Tuberous Sclerosis. The doctors told us Cole would most likely never walk or talk and would most likely be severely retarded. Our beautiful, health baby was now given a very uncertain medical prognosis. However, at 9 1/2 months, Cole walked, and now is saying a few words. Although he is delayed, we see him understanding simply commands. His large motor skills, however, are not delayed, and we see him doing many bright things. This has been a very difficult road to travel as parents. Our hope is that Cole will continue growing to be happy and independent. This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
