"Fight for my Life" Aaron Storck Medical fund

            I am creating this gofundme for a dear friend of mine who has been going through a tremendous difficulty. I’ve known Aaron since we were 19 years old and now he is 35 and fighting for his life and I have to do what I can for Aaron and his mother.  It all started when Aaron was living in Denver, he began experiencing symptoms a few shorts months after his brothers' untimely death. Symptoms that appeared as a neurological disorder which included double vision, slurred speech, tremors, coordination problems which has progressively made it harder for him being able for him to speak and even walk. The very things that we automatically do in our daily lives has been a huge struggle for him to do on his own like breathing and swallowing.
           Aaron has been out of work since July which is difficult for him because he misses working on projects with his team at Ultimate Software. He is currently not capable of working and the brilliant music he once wrote and played is currently silenced. With being out of work, it has made it questionable of when his work insurance would be running out as well.
Currently Aaron is back in Boca Raton living with his mother Ellen who is his sole caregiver and he has some emotional support from a few of his friends. That is why I have created this gofundme to somehow help financially towards him and his mother.

The gofundme would go towards:

⦁ Specialists
⦁ out of pocket costs/ travels costs
⦁ Physical therapy
⦁ Occupational therapy
⦁ Speech therapy
⦁ Medical supplies
⦁ An adjustable bed with railings
⦁ Specialized wheelchair
⦁ part time home care

     Mentally I see that he is trying everything he can to save his life, he truly wants to figure out what is causing this deterioration. At least he has the support of his mother and including his emotional support dog now service trained adorable Labradoodle named Sam which brings him great comfort. Aaron inspires me everyday, and that the little things that we take for granted, I see him struggling and trying to survive this.  Aaron's will to live is very strong and anyone that knows him knows that he has a great a need to speak and communicate so this condition is especially frustrating for him and his Loved ones. He is still as brilliant as he always has been and he fully understands the seriousness of his condition. Aaron's voice is missed greatly by those that love him. His condition is poorly understood at this point.

More about Aarons' journey of this condition and treatments he has tried

This condition is categorized as a brain stem disease but the cause is still unknown. We must do what we can do at this moment as Aaron needs our help desperately before it is too late . It was July of 2019 when this nightmare started. Abruptly he began to experience fatigue , blurred vision, slurred speech and coordination problems, followed by double vision, and tremors, which did not allow him to walk unassisted because he lost his sense of balance.
     Aaron was admitted into the UC Colorado Medical Center and was worked up with MRI's and a spinal tap which revealed an unusual antibody and he received plasmapheresis. At which point he was too weak to remain in Colorado and a friend from his company and his mother packed his things and moved him back to Florida. They sought treatment at a local hospital at Boca Raton Regional hospital as well as the Cleveland Clinic of Florida. He was then hospitalized again and evaluated as his conditioned worsened. The team of medical doctors treated him with various treatments including IVIG infusions, with no positive results. Miraculously he got an appointment at Mayo Clinic where teams of doctors took on his case. After many weeks of MRIs, pet scans, spinal taps, Dat scan, autonomic reflex tests, etc, he was initially diagnosed with brain stem encephalitis . He was treated there with more IVIG infusions, Chemo Therapy, and more. They stated that this Rapidly progressive illness characterized by progressive parkinsonism, dystonia, and ataxia without autonomic failure.
      In terms of his work up, a conclusive diagnosis has not been reached. Geneticists are researching and conferencing on rare genetic diseases which may be an explanation of childhood neurological problems. Aaron continues to deteriorate, he can no longer walk, his speech is severely limited and his swallowing is more difficult and choking is more possible. His mom takes him to and from Mayo Clinic in (Jacksonville) from their home in Boca Raton, sometimes spending 6 weeks at a time to figure out his condition. It has been a process of elimination over 6 months as his condition worsened. They Ruled out stroke, brain tumor, autoimmune encephalitis. The specialist did testing on a deeper genetic level and believe it is a rare form of Parkinsonism possibly due to a genetic disorder.
       Unfortunately the cause of his disease and deterioration are still unknown and under research at many major institutions including The Mayo Clinic, Cleveland Clinic, and hopefully Aaron will be accepted at the National Institute of Health. Most recently John's Hopkins has been evaluating his rare case to see if they can provide some insight as to why he has deteriorated so quickly and determine the root of the problem. Without knowing the direct cause they can only treat his symptoms as they do not have clear diagnosis. Presently Aaron's speech, motor skills, strength and vision have all weakened to the point of full dependency. It has been financially, physically and emotionally draining. With him not being capable of working at this point and the need of assistance in his home which is not covered by insurance. His mom had to sell her second car to take care of what she could. I thought if Aarons' friends and coworkers could come together and donate to take some of the financial burden off of Aaron and his mother. Anything contributed would be helpful and much appreciated.
      Aaron wants you to know that he is fighting this with everything he has and is looking forward to getting back to normal and back to work especially. Working has been one his primary goals and has given him strength as he misses everyone at Ultimate Software. In Aaron's words "This has been one of his hardest challenges of my life but I am determined to pull though for the ones I Love". Thank you in advance for all your Love and support . Right now he needs us like never before.