AJ's AE Fight Fund

AJ's story is being written by his sister Jenny and I am writing it on behalf of myself as well as our parents, Al & Debbie Goetsch.

Many people have been calling, texting and messaging us to inquire as to what is going on with AJ. To this point we have kept it pretty much on the down low in respect to AJ's privacy. It has now come the time that we need to tell his story and ask for support.

Earlier this year, AJ began experiencing tingling in his face, hands and feet. Being a Type 1 Diabetic, AJ met with his endocrinologist to have nerve testing done thinking this was the cause of the tingling. The nerve testing came back fine so AJ went on with life as usual. In a short period of time, his speech and motor skills became impaired and our parents as well as some of his friends urged him to seek medical treatment. On April 19, 2016 AJ had a MRI done and at that point was told that he is not to be driving; luckily Mom & Dad were with him at this appointment. Dad took AJ back to his home in Krakow, then drove Mom home to Sheboygan and headed back up to stay the night with AJ. The next morning the doctor called to say that AJ's MRI came back normal but she wanted AJ to be admitted to Theda Clark Hospital in Neenah for further testing. Besides two days that he was released to our parents care at their home, Theda Clark has been AJ's home ever since.

After multiple MRI's, CT scans, spinal taps and too many blood draws to count, AJ has been diagnosed with Autoimmune Ecephalitis (AE). The cause is still unknown - doctors feel that when he had a nasty cold earlier in the year, his immune system attacked the cold virus and continued on attacking his nervous system. Ultimately, this is a brain injury and has taken a complete toll on AJ physically. AJ can't perform daily living activities on his own that we all take for granted - eating, brushing our teeth, etc. AJ has lost almost 30 pounds since his admission to Theda Clark and has been primarily bedridden. There was a brief period of time in which he was able to get out of bed and participate in Physical and Occupational Therapy and was walking with the assistance of a walker. This is no longer the case and he has since regressed to a more deteriorated condition than when he was first admitted. For the last 2+ months, Mom stays with him 24/7 with the exception of one night a week when I can stay overnight and Dad drives back and forth from Sheboygan to Neenah every single day. Dad would stay but along with needing to tend to things at home he has Bailey, AJ's dog, and if you know AJ you know what that Bailey means to him!  

AJ has undergone treatments to fight his condition including steroid blasts, plasmapheresis and most recently IVIG treatments. We were all hoping the IVIG treatments were going to be the "miracle" treatment and give us back our AJ. This does not seem to be the case, so the next possibility is a chemotherapy drug that has shown to be successful in cases such as AJ's. This drug is very costly and at this point we are unsure of the insurance coverage.

What we do know is that a discharge from Theda Clark is looming in the near future (as soon as July 7th) and whatever facility that AJ is discharged to will not be in his insurance network. The not being in his insurance network is the reasoning for this Go Fund Me campaign....AJ's out-of-pocket cost for an out-of-network facility is $7000 so that is what I put as our initial goal. AJ is going to have a long road ahead of him as any progress will be very slow going.

Any donation will mean the world to us as his family. It's heartbreaking to see him in his current state and we just want our AJ back as I'm sure all of his friends will agree! Anyone who knows him knows what a spunky and full of life person he is...and that's putting it mildly!   

All of us truly appreciate the phone calls, cards, texts and Facebook messages that we have received so far. We would also like to give a shout out to Tayler, the manager of AJ's business, Route 32 in Krakow. We don't know what we would have done or will do without her taking the bull by the horns and running the day to day operations....it is appreciated more than words can say!