We were at a family picnic to celebrate Jackson's Birthday when we noticed Jackson staring up at a tree –
but thought nothing of it as it looked like he was trying to figure out how he was going to climb this huge oak tree.

 

Jennifer went over to Jackson and spoke to him but he
was staring off into space then she screamed for me.

 

Jackson has food allergies, I immediately thought he ate
something and couldn’t breathe.

 

I tried to make him throw up but nothing came up.

 

Jennifer sister, Judy a former nurse, said that he was having a seizure.

We rushed him to the hospital.
 

Over the course of that week, Jackson was back and forth to the
ER and Children’s hospital as he continued to have seizures
and deteriorate.
 

They tested Jackson for Meningitis, high sugar, low potassium
levels, Lyme disease and found nothing.   
He had 4 MRI’s, 2 CAT scans,
3 EEG’s and 2 Lumbar Punctures (Spinal Tap) and numerous blood drawings,
all the test results all came back negative. 

 

The doctors didn’t want to call it Epilepsy, because, he didn’t have
any of the medical symptoms of a person who is an epileptic. 

 

Then Jackson starts losing the ability to speak.

He is able to say one to two words, but you could tell that he 
frustrated because he was trying to communicate to
us but couldn’t find the words to say. 

 

He also started having trouble walking and

then it got to the point where he couldn’t walk.

 

He started to speak gibberish.  He had involuntary arm movements.

 

In a strange twist of events, a few weeks into testing, one of the resident doctors thought that Jackson was experiencing a rare auto immune disease: Anti Encephalitis or Anti-NMDA Receptor Encephalitis. 

 

The resident doctor had studied under the doctor who discovered this disease.

 

With this information, testing went off to the Mayo Clinic; the Gilmores and the staff waited for
12 excruciating days for the results to come back. 

 

Finally they received the diagnosis of Anti-NMDA Autoimmune Receptor Encephalitis. 

 

He started to lose the ability to eat. 
At times he would hallucinate and other times
he would try to jump out of his hospital bed.
You could shout his name and he would look into space.
We had to put eye drops in his eyes because he wouldn’t blink.  

 

He was basically catatonic and no one could tell us what was wrong with him. 

 

The hospital transported Jackson to Children’s Hospital in DC.  

Jackson was finally transferred to a rehabilitation center in Baltimore at Johns Hopkins, The Kennedy Krieger Institute where he stayed for another two and a half months. They are world renowned for dealing with children with Brain Trauma illnesses.

 

 

Learn more about Anti-NMDA Receptor Encephalitis click here