Breaking Barriers, Not Bones.

Before I begin, I would like to thank all of those who take the time to read this in its entirety.

My name is Hunter, I am 20 years old and live in New York. I was born with an extremely rare brittle bone disorder known as Osteogenesis Imperfecta type 3. In addition to weak bones, the disorder has an impact on all connective tissue in my body and has left me wheelchair bound since birth.  I have sustained over 400 broken bones throughout the course of my lifetime, the majority of those being severe breaks in my arms and legs. 

Over the years, I have undergone numerous treatments in hopes of regaining functionality and bone strength. In addition to having surgery on my arms and legs dozens of times, I have tried a wide variety of medications to keep my bone density at a stable level. The most recent of these medications is known as Prolia, an experimental antibody that has showed promise for Osteogenesis Imperfecta. In 2015 alone, I broke a total of 21 bones. Shortly after this vicious fracture cycle, I started Prolia and have been fortunate enough to be able to report 0 fractures since then. Despite all experts concurring this is something that I should stay on and be getting twice annually,  my insurance refuses to cover this essential medication. To make matters worse, the cost has recently been raised to $1200 per dose. This is $200 per month for a drug necessary to keep the broken bones in check that I can not afford to give them.  While I am uncertain if Prolia has been solely responsible for the fractures slowing down, I certainly do not want to risk finding out.

In November of 2017 I was diagnosed with Basilar Invagination, a condition in which the c2 vertebra went upwards and back into my intracranial space. My upper spinal cord and brain-stem are both being pressed on causing a large amount of neurological symptoms. There is no easy solution to this, and I am consulting with all experts that I can to find one. General surgeries for this condition do not work with me in light of my brittle bones not being able to hold so much hardware in the neck.

In addition to rising medication cost that I am unable to keep up with, I currently do not have any means of consistent transportation as I do not own a vehicle. Figuring out the most efficient way to drive has been a real challenge for me, as well as a goal for a very long time. I am currently exploring all options, as I am certain that the ability to drive would add in a massive independence factor and completely change my life forever. I have been looking into a variety of different vehicles with hand controls, and have been doing some research on things such as the Kenguru Electric Vehicle which is built for wheelchair users. It would certainly be a dream come true to one day be on the road. I would love the ability to drive myself to appointments and events, and just live life as freely as I possibly can. I would like to lessen my reliance on others, pursue employment opportunies and experience the world with my own eyes.

Please keep in mind that the goal amount is not set in stone! I was forced to choose some number. Each and every cent will go towards bringing me closer to my final goal of independence. Thank you so much for taking the time out of your day to read this! --