In search of a proper diagnosis and treatment.

My name is Hunter Shaffer. I am 25 years old and was born with Osteogenesis Imperfecta type 3. I have broken well over 500 bones, primarily my arms and legs. 5 years ago now, I created a GoFundMe to raise money for an experimental bone drug known as Prolia. It was extremely expensive, costing over $1,200 per injection. (Please note that GoFundMe requires you to set a donation goal, any amount helps)

 

On November 13, 2017, my whole world turned upside down. I was diagnosed with Basilar Invagination, a form of brainstem compression as well as Chiari Malformation. In late 2019, I had surgery to remove 3 pieces of bone from my skull to correct the Chiari. The picture you see is post-op, where I was unconscious for a 23 hour period. While this surgery gave mild symptom relief, the Basilar Invagination is inoperable and the general consensus from my doctors is that there is a neurological component that we are missing. For over 4 years now I have battled with blackouts, extreme pain, very odd muscle spasms, changes in perception and most recently complete blindness. My Neurologist believes that I may have Multiple Sclerosis due to the strange nature of my symptoms. I will have a few good days or weeks, and then my body will shut down on me for a very long period of time. I am now very afraid of the potential of permanently losing my eyesight, or even my life. In light of my fathers recent retirement, very little is covered by my insurance. A recent prescription cost $700 for only a months supply. 

In light of these financial hardships and the costs that will pile up from so many appointments, I have come here to ask for your help. I currently have an outstanding $5,000 ambulance bill as well. 

The goals for this fundraiser are to explore all medical options to find a diagnosis. While I have not broken a bone in quite some time now, my quality of life has never been lower and I fear that I will soon leave my family and friends behind. 

My hobbies include activism, competitive typing, singing/rapping. I am one of the worlds fastest typists, and have been interviewed by Syracuse news in regards to my disabilities and typing speed. I currently have a peak record of 227 words per minute, which breaks the overwhelming majority of records when it comes to typing. I am also a White Hat hacker and work to mitigate Distributed Denial of Service attacks among other things. My verification video for my typing speed - other videos of me singing and an older rap song that I wrote are also on my Youtube channel. 

The amount of out of body experiences that I have experienced over the years are outright terrifying. I have been told several times that if surgery was attempted on the compression of the brainstem, I would certainly die as my neck is not strong enough to hold the hardware.

I worked for the Global Conservation Group as the NY office manager&Cybersecurity advocating for animals and reaching out to various police departments in New York and Wisconsin for several years, starting at age 13.

I have gone through dozens of operations in my life due to the Osteogenesis Imperfecta, including the one to remove pieces of bones from my skull. I am permanently wheelchair bound. I need a proper diagnosis and treatment plan. The random onset of symptoms such as blacking out for hours at a time, complete paralyzation for prolonged periods and incredibly dangerous spasms in my neck that could lead to a broken neck or perhaps even death. I am certainly getting worse as time goes on. No funds will be withdrawn into my account until I have everything needed lined up with my Neurologist, Neurosurgeon and all other Doctors that are attempting to help me. I have an appointment coming this Wednesday where my options will be explored. 

 

I understand with the ongoing pandemic, many will be unable to donate. Please do not feel bad if you cannot. Please spread the word as much as possible. There is no particular goal in mind, GoFundMe forces you to set a particular dollar amount before setting up a fundraiser. I will post constant updates, and will answer any questions people may have in the comments. Unfortunately, medical care in the US is expensive for even "normal" people. Even more-so for those with chronic conditions like myself. Not a single doctor that I have been in contact with since November 2017 believes that all of the symptoms are due to compression of the brainstem, and while life is incredibly hard at times being wheelchair bound I do not want to leave my family and friends behind. I will fight until the end. Please spread the word and help me become the person that I know I can be. It is getting harder to manage as time goes on, I need a clear and precise diagnosis. If you have read this far and care to spread the word, I am forever in your debt. 

 

Love, Hunter. <3