A Second Opinion for JJ

 "As a parent, one of the worst feelings is watching your children go through something really tough and not being able to fix it for them. All I am doing is all I can do. I can only be here to ease the pain" (unknown).

JJ's Story:

JJ, who will be 17 years old on March 9th, is the sweetest, most loving and adorable happy child anyone could meet. He truly is remarkable. Unfortunately, JJ has autism, suffers from kidney disease and epilepsy. However, despite his health concerns, he has been strong and continues to fight daily. Initially, doctors told his mom that he would not survive past a year old. Yet, here he is-17 years later, continuing the big fight and still very much alive (of course purposely proving those past doctors very wrong.) To us all, he is a miracle.

Sadly, on February 16th, 2019, JJ was not able to be as strong as he usually is. Something was wrong. "He just isn't right," said his mom Karen (whom I call- SUPER MOM). JJ was trying to tell his parents exactly what Karen was feeling. Something indeed wasn't right. Since JJ cannot speak his feelings, he tried to communicate by abnormal behavior such as, throwing items around, crawling, and just being... different. Karen noticed that JJ was weak, couldn't breathe properly and eventually, could not even hold himself up nor walk. We have NEVER seen JJ this way. In an instant, this strong, upbeat young man, became paralyzed and unable to breathe for himself. I'm sure you could only imagine how his family reacted to this. Shock is the right word. Pain is another. But fear... fear is the main word and feeling. Fear that their son, who has survived years after being told he wouldn't, might be in a state where his life could now be seriously compromised. "What is happening to my son?" his mom just kept asking. After spending 2 very sleepless nights in the hospital, JJ's family was told that his tests confirmed he might have an autoimmune disease. Theories suggest this is a very rare autoimmune disease called Guillain-Barre Syndrome. The exact cause of "GBS" is unknown but is being classified as a disorder that affects the nerves in the body. It is stated that it can result in muscle weakness, pain, sensory loss and even temporary paralysis of the face, eyes, chest, and limb muscles. Paralysis of the chest muscles, is what is leading to the breathing problems. GBS is treatable but not curable and can be life-threatening. Recovery is seen in many patients, but in JJ's unique case, he can take much longer than an average healthy child would to recover. 

Karen was told that this case of GBS could have possibly occurred due to a post viral infection, surgery, trauma, or reaction to an immunization. However, to the best of his parent's knowledge, JJ was not sick, did not have any recent surgeries, trauma or any immunizations. But, testing confirmed that JJ did have "walking pneumonia," which he showed absolutely no signs of having. Doctors say this is quite common and think this is most likely what contributed to the onset of his GBS. 

Currently, JJ cannot feel anything below his pelvis (we know this because he is typically very ticklish on his feet and now has no response to touch in this area nor does he move.) His upper body is extremely weak, but he does strive to try to lift his arms from time to time (usually to try to give a high 5) on rare days where he seems to be a little more coherent than other days. He also still cannot breathe on his own. He has received two, five days worth of IVIG treatments. As of now, we are waiting to see if treatment will show any true concrete progression. Since the first course of treatment did not, Karen had many concerns with doing another round but eventually agreed to it. If the second round is not truly effective, she is afraid that a third course will have extreme effects on her son's kidney. Remember, he is a special case. Since JJ is autistic and suffers from renal disease, a third course could potentially have side effects on his only kidney ( which is known to do so) and will only make his renal issues worse. Not to mention, JJ also had two seizure episodes while on this treatment. He had not had one for a whole year prior. Mom is quite alarmed. Has not left her son's side and has not had a good nights sleep for weeks. She just does not know what to do to help JJ other than be by this side, every step of the way. She truly is a super mom, even though she will deny it and say "A for effort guys".



Reason for this GO FUND ME Page:

Since this situation is so unique for a child like JJ and there are concerns about his overall health, both in general and in recovery, the family would like to seek a second opinion. To be clear, this is not because they do not believe in what the doctors are telling them. It is so they can ensure this is, in fact, what JJ has and can have some peace of mind. Due to the complexity of JJ's medical setbacks, the family wants to make sure that this course of treatment is the most effective and no dire side effects now, or in the future will hurt him. Also, if it turns out that this is not what JJ has, we all would like for him to get off this treatment as soon as possible, as not only to prevent damage from occurring but also so proper diagnosis and treatment can be found.

After researching and finally seeking some information on a second opinion, this treatment is a bit costly for the family right now. The price above simply reflects the cost for the ability of another hospital team to review JJ's case. Anything else after that, as of now, is unknown. For now, donations of any amount would be greatly appreciated. Please help us in helping JJ's family cover this expense. It would mean the world to us!

We appreciate you taking the time to read JJ's story.  We ask that you, please post and share this as much as possible. Time is of the essence, and a child's life is at stake. If JJ could, I am confident he would either give you a high five or a kiss on the cheek to show his appreciation =)


& please keep JJ in your prayers.


From the bottom of our hearts,


JJ's loved ones <3



For more info on GBS click here GBS 


Please pardon any spelling & grammar errors etc.