Help Jordan in his battle against AE Encephalitis

Jordans' Story:

On February 23rd, my 18 year old nephew Jordan, came down with a cold. It was a seemingly ordinary upper-respiratory type of cold that we have all had once or twice this past winter. The cold passed, but he was left with a lingering headache that Ibuprofen just didn't seem to do much for. He continued to play basketball with his friends, go bowling with his dad and fight through it.

The headache started on one side of his head and after a few days moved to the other. It had become constant and my sister took him to see the doctor who didn't think much of it. Several more days passed without any relief and without knowing it, on March 10th Jordan drove himself to the emergency room while the rest of the family was at an away game. The hospital did not see any cause for concern and they gave him pain medication and told him he was having cluster headaches.

A day later he asked, "Mom, do you think this headache will go away before the party on Saturday?" He'd been looking forward to it and why would anyone think otherwise? After no improvement and the headache becoming increasingly intolerable, on March 13th my sister took Jordan in for a CT scan, which came back normal.

On March 14th, Jordan's behavior became erratic and he was not acting like himself. He went to bed early and when my sister arrived home, she attempted to wake him for dinner. That's when Jordan wouldn't wake up. Completely unresponsive, she called 911 and the paramedics immediately took him to the ER.

Although the hospital did not get an initial MRI, they suspected Meningitis, possibly bacterial, possibly viral. They just didn't know. They began running test after test and while his lumbar puncture showed an abnormally high white blood cell count, all of the other tests came back normal.

His fever was between 100-102 at all times and he was unaware of his surroundings. He could no longer stand or walk, but he occasionally knew who his family and friends were and would say our names if asked.  Although, he no longer seemed to remember us being there when he looked away and then looked back.

Now with a diagnosis of Meningitis caused with what they thought was Listeria, Jordans' condition began to rapidly decline. This was unlike any case of Meningitis we had ever heard of. He was unable to keep food down and no longer recognized his mom & dad. The results of the MRI came back normal and it seemed like we just needed to wait until the antibiotics did their job. Then the seizures began.

After a week of no food and only IV fluids, the seizures came fast & severe and it was time for him to be transferred to Rush ICU.

After a few hours of the Rush neurology team reviewing the MRI that was taken 5 days earlier, they found that his brain was swollen, his blood vessels constricted and they immediately diagnosed him with autoimmune encephalitis. He was malnourished at this point & a feeding tube was put in.

Jordan has now received high doses of steroids and 4  immunotherapy treatments, unfortunately, without improvement at this point. He will have 3 more treatments before they discuss more aggressive treatment options like Chemotherapy.

He is still unable to keep food down and after the dramatic loss of 30 pounds (he was only 165 pounds to begin with), surgery to put in a longer term feeding tube is a day or 2 away. Jordan is unable to walk, talk, eat or stay awake for more than a minute at a time. We are still waiting on the blood results from Mayo to tell us exactly which antibody is causing this. He is on several anti-seizure medications and while he has been seizure free now for 48 hours, his condition has not yet improved. His heart rate jumps from 78 to over 130 several times an hour in his bodys effort to fight this disease.

I have seen my sister be at her strongest, even when I have been there to hear the neurologists tell her, "some people survive". I cannot imagine where her strength is coming from, when she is going on no sleep and pure fear. Jordan is young & has always been otherwise healthy, so we KNOW he is fighting this as hard as he can and he IS going to beat it.

There is no time line. My sister has been by my nephews side since the moment he was admitted. She cannot work and is struggling to also be there for my niece Nikki, Jordans younger sister, while needing to be at the hospital.

Please know that any donations, prayers & sharing are so greatly appreciated by our whole family. My nephew is only 18 years old. He is going to graduate on May 19th and set to go to the University of Kentucky in the fall. He is an amazing kid, who needs to get back on his feet so he can get back to his car that he loves, his friends, who have been amazing & visiting him every chance they get and of course his family- mom, dad, sister, grandparents, uncles, aunts & cousins who all love him more than anything and just want to see him wake up.

*100% of all donations will go directly to my sister, Debbie Inciso, mother of Jordan, who is unable to work during this time. The funds will help pay her expenses so she can be with Jordan.