Please help us as we share Jakes story and raise money for his much needed medical treatment. Kari and family your PICU family is behind you 100% to support you. We love you.
So I have always been pretty quiet on social media about my son's disease, and I'm not sure why. Jake has an Autoimmune disease called "Autoimmune Limbic Encephalitis."Maybe because I didn't want him singled out because I didn't want to dwell on it and make it "who he is" in other people's eyes. Also, because it's rare and it's difficult to explain to people, and can be misunderstood. I haven't made it the center of who he is because I always had hope that he was getting better. Every time he had a "relapse" or a "flair up" it has been like I was having a nightmare and someone had swiped the rug out from under us.
Every time he has a relapse, he would have acute, aggressive and intense treatment and still does have harsh treatment and then continues with "maintenance" treatment with frequent hospitalization for Iv infusions and daily oral medications.
Oddly enough when he does have one of these terrible relapses the worse part is the weeks or months leading up to getting hospitalized for treatment. Once he is hospitalized he gets lines, sedated, scans, plasma exchange, infusions; we get to give hundreds of explanations that we have had to give over and over again every time.
However, for Jake, the pain, suffering, fear, loss of function, changes in brain, isolation this disease causes, loss of función, and his world is turned upside down every time he gets hit with this. As his parents, this is unbearable to watch every time. A small example is Jake had to re-learn his complete alphabet twice in kindergarten because he had a "relapse" in November of that year. I lost it when that happened, and his amazing teacher without knowing his disease processes knew how to calm me, and they pulled together and after his immunosuppressive medications were changed and he started to improve he begun to catch up again and re-learned it AGAIN. Making matters more painful; this disease changes the way those affected by it respond to everything starting by the way they act and respond so people can see them as being "difficult," " brats," "Stubborn" " aggressive," " mean." etc.... There is a brave young woman who was affected by this disease who wrote a book about her experience and titled it perfectly, the title of the book is " BRAIN ON FIRE."
There is now a movie out on this book which describes her ordeal.
Anyways, I don't know why I felt finally had to out there in more detail what my son goes through on a daily basis, but I finally did. He is an amazing little boy who struggles like crazy to be just like everybody else, and he does a damn good job at it. He hits a bump on the road when this monster called " LIMBIC AUTOIMMUNE ENCEPHALITIS." gets the best of him, and we have to fight harder to get him back on his feet, but he does give it all he's got! I'm hard on him, and he doesn't know why but what he does know is that I think he is one INCREDIBLY strong little boy!"
- Kelly Barcelo
- Alicia Diaz
- Yadira Catalan
- Heather Williams
- Joanne Fernandez Catoni
Organizer and beneficiary
Elizabeth Marie Bouzo