100 days to share 100 stories.
100 days to tell the world.
100 days to spread hope.
Fight rare neuro-immune disorders. Together.
Our story is one of being in the right place at the right time.
When Stephen was 3 years old, he attended a birthday party and fell down. Then later that night at home, he fell again, but this time he was scared and almost inconsolable. After a warm bath, he went to sleep but was restless all night. When he woke up Sunday morning, February 10, 2013, he couldn’t walk. He got out of bed and dragged himself, crying until my husband got to him and picked him up. We wracked our brains trying to figure out what was going on with our otherwise healthy boy. He didn’t seem to be able to wiggle his toes or move his leg very well. As the day progressed, he was less coordinated and not getting better so we decided to take him up to Children’s hospital in Dallas just to get checked out. We had no clue that it could actually be something serious.
The ER doctor took X-rays and examined his leg. When it showed no breaks, she dug further and ordered a neurology consultation. Next, came an MRI of his spine. We were getting worried. We stood alone in the waiting room at 2 am while our baby was having an MRI done. There are no words to describe the utterly helpless feeling of knowing something was very seriously wrong with our child and being unable to fix it. Stephen was admitted and more tests were run. A whole team of neurologists were trying to help Stephen. Another MRI of Stephen’s brain was ordered and finally a diagnosis was made -Acute Disseminated Encephalomyelitis. We were introduced to Dr. Greenberg, Dr. DeSena and the team. Within 24 hours of the onset of symptoms, he was on intravenous steroids. Next, a port was placed in his jugular vein to get him ready for the upcoming plasma exchange procedures. Miraculously, he responded with some feeling and movement after several days. He had seven rounds of plasma exchange over the next 15 days. PT and OT were started immediately in the hospital and continued for about six weeks after he came home from the hospital. Overall, our hospital stay was 21 days.
Now, you would never know what this healthy 7-year-old has been through. We feel so incredibly lucky that he responded so well to the treatments and know it was because he was being cared for by the very best neurology team right from the very beginning. Today, physically, there is a very slight difference in how he wiggles his toes on one foot. When he gets tired, his leg and foot may ache. Emotionally, his illness and recovery has affected our whole family. Our older son, Sam, spent those 21 days with family members. We always wonder if there will be other effects, such as academic troubles, that are revealed as Stephen grows. Overall, we feel like his recovery was miraculous and credit his doctors with identifying and treating his ADEM quickly.
Chris & Theresa Burkhalter
MEET OUR OTHER HOPE AMBASSADORS
SUBSCRIBE TO MEET TOMORROW’S HOPE AMBASSADOR