Full story
Caleb is now 16 years old. At the age of 11 he started showing the first signs of what is currently called Functional Neurological Disorder (aka Conversion Disorder.)
Caleb and his sister, Jena Rhys, sing and play music together. When he is doing things he enjoys he experiences fewer symptoms. Unfortunately, his disorder has currently interrupted his ability to "do school" the traditional way. He has a 4.0 and was burning through about one year of high school every month and a half through an online program his school provided this year. But he struggled as his body began to "reject" this process and react. He does not shrug off responsibility and thoroughly wants to finish school so he can move on to better things such as learning languages and looking into a potential career as a Cryptologic Linguist. He is currently studying four languages simultaneously and has dabbled in approximately 24 various languages. Caleb is a bright and determined young man who is being held back by a very debilitating condition.
THE CURRENT NEED
$10,500 by March 2019 for further diagnostics and treatment which is only available through Cognitive FX in Provo, Utah and yet is not covered by insurance. (See below for a breakdown of costs.)
A full description and explanation of what Cognitive FX does may be found via their website:
CognitiveFXUSA.comCaleb is currently scheduled for March, 2019 for treatment at Cognitive FX in Provo, Utah. Please don't hesitate to reach out to Cognitive FX to verify and to contribute to them directly on Caleb's behalf. We are also putting into place other methods for donors to contribute and will keep this page up to date with all options. Thank you!
THE JOURNEY
Caleb’s body has taken him on a rollercoaster ride unlike any even the best fiction authors could possibly ever concoct. His body “reacts physically to either conscious or unconscious conflicts or desires.” Or so this is the theory at least. Some say it is the subconscious surfacing. What we do know is that it is a combination of the brain and neurological systems on a crash course that has produced the following:
For the past five years, some of Caleb’s experiences include:
Temporary loss of...
- his hearing - the longest term being for approximately one full week
- his eyesight - for two and a half months
- BOTH his eyesight & hearing at the same time... for a good four hours - that wasn't fun
- the use of his legs... essentially becoming a paraplegic
- complete muscular control like a quadriplegic
He has also experienced...
- seizure-like episodes which cause his entire body to shake - subtly at times and violently on other occasions.
- his muscles twisting his body into painful contortions
- his hands locking up with his muscles completely engaged
- his speech where his words have come out as a jumbled mess of letters
- his eyes clamping shut for hours and sometimes days
- uncontrollable loss of consciousness
- tremors consistently throughout the day. On bad days he can have thousands of these.
- ...and the list goes on and on and on... and on.
Caleb faces on a daily basis an unpredictable life. It is nearly impossible to predict what may lay around the corner for him each day.
For the first year and a half of this journey, Caleb got pretty bad. Nearly every doctor he saw didn’t know what to tell us. Eventually, this led me to reach out to the Mayo Clinic in 2015 where I took him for an entire month. They conducted thorough evaluations and put him through a program which taught him advanced stress management techniques - meant to help him manage his neurological symptoms.
Caleb returned from the Mayo Clinic “seizure free”... so we all thought. Unfortunately, he was taught there not to talk about his episodes. And so we went on with our lives never realizing that on a daily basis, all the seizures and episodes Caleb had experienced before were still happening. They were like a raging river just beneath the surface as he worked diligently to suppress them all. They eventually resurfaced…
WHERE WE ARE NOW
In February of 2018, Caleb lost his eyesight due to Conversion Disorder. After two months of attempting many different potential solutions yet with zero improvement, we knew we needed to seek out more answers and help in order for him to hopefully regain normal vision and function.
After conducting some research, we found a clinic in Seattle called Dean Doering & Associates. Dana Dean Doering has joined leading experts on the topic of Conversion Disorder and is a keynote speaker on the topic. She states that our medical community essentially allowed Conversion Disorder to fall off the radar for nearly 40 years.
Conversion Disorder / Functional Neurological Disorder (FND) is more common than multiple sclerosis and far more debilitating than even Parkinson’s Disease
Dana suggested that Caleb undergo a Neuropsychological evaluation through their clinic partner. After placing Caleb on medical leave from school, his vision eventually returned just before we left for Seattle. Dr. Steve Tutty who conducted the evaluation then made the referral to Cognitive FX in Provo, Utah. He believes that Caleb’s results indicate that the Epic Treatment offered through Cognitive FX would be highly effective for him and he would be a perfect candidate.
WHAT IS BEING FUNDED
The testing and treatment that Caleb needs is not covered by insurance. As a single mom I have struggled to provide financially for Caleb’s medical needs and have had to acknowledge that we simply cannot do this alone.
My research over these past five years has led me to speak with researchers at Stanford University, the Mayo Clinic (as we spent an entire month there in 2015), and specialists who have consulted with many of the top Neurologists in the world who are currently studying Conversion Disorder and Functional Neurological Disorder.
We have come to the conclusion that Cognitive FX in Provo, Utah is an exceptional clinic unlike anything else in the world and with documented results. They truly believe they can help Caleb… And we all agree!
WHAT IS NEEDED (NEXT STEPS)
$10,500 is needed in order to get Caleb to this next step. This would cover $8,900 for diagnostics and treatment at their clinic and travel expenses to get there. We are adding some additional funds to cover any processing fees payment processors charge. Caleb may potentially need a second week of treatment. If this is the case, that would mean an additional $8,900 plus accommodations for a second week. Caleb will need ongoing follow-up care upon returning from CognitiveFX as well.
THANK YOU!
We appreciate all of you who have taken part in helping Caleb reach his goals! You are deeply loved and appreciated! Thank you!
Please contact us via the page here or through Caleb's Facebook page @CalebsMedicalFund for alternative methods of giving should you wish to donate by other means!
