Aaron would need to raise $30,000 for a CI cryosuspension, so please consider donating to the Venturists for his cryopreservation fund. (Mark Plus)
Aaron Winborn's story
My name is Aaron Winborn. I am a 45 year old web developer and author, and the father of 2 young girls, and our lives were upended last year when I received the devastating diagnosis of ALS, more frequently known as Lou Gehrig's disease. It all started in August of 2012, soon after the birth of our younger daughter, when I noticed that I had difficulty clipping my nails. At 1st, I thought it was the clippers, until I threw out that pair and tried another. I began to lose my grip strength, and I quickly developed weakness in my arms. I went 1st to a chiropractor, suspecting carpal tunnel syndrome. Things escalated from there, until I was sitting in the neurologist's office and listening to Dr. Simmons tell me that I had an incurable terminal illness, in which chances were even that I would be dead in 2 to 3 years. And even if I beat the odds and am one of the lucky 10% who go on to survive the decade, it will be in a locked-in state, completely paralyzed, like Stephen Hawking.
I have had a full life, full of adventures and exciting times. When I was 19, I lived in a monastic retreat center briefly, before living with and working for Elisabeth Kubler-Ross, the author of On Death and Dying. After that, I lived in a commune in England, where I helped to build a meeting house. Then back stateside, I worked in a corporate culture for a few years. After some soul-searching, I left that, and flirted with a few jobs, including waiting tables during the graveyard shift at IHOP, working in a garden nursery, and running a flight simulator for the Navy. When I learned about Sudbury schools, and a new school being built in North Carolina, I dropped everything and moved there to be part of its startup. That began a lifelong commitment to this Democratic, age mixed, non-coercive model of schooling, where I worked at another similar school in Connecticut. I also worked as a puppeteer in 2 different puppet theater companies. Somewhere in all of that, I lived for a few months in another monastery, and met soon after my lifelong partner, Gwen.
She changed my life. We had our 1st daughter, Ashlin, in 2003, and decided to move to a place closer to family, as we were both from the South. We chose Harrisburg, Pennsylvania, for The Circle School, so that Ashlin would be able to experience that model of schooling. Also about this time, I chose to work for Advomatic, as a web developer. In 2008, I wrote a technical book, Drupal Multimedia. Sabina was born in 2010, and has brought much joy to our lives. We do not regret her being with us, even though we would have chosen not to have her, had we known earlier about my upcoming diagnosis, and just how difficult that life was about to become.
As I said, I have had a full life, and I know that many might say that I should be content with that, and accept my upcoming death. I have even been told such by my primary care physician, whom I have since fired; I wrote about that on my blog at http://aaronwinborn....heaven-can-wait
As you can guess, that is not option for me. I love life too much, and have too much to do still. At the same time, I need to be realistic, and make responsible choices. Currently, from society's perspective, my only available choices are to die sometime within the next year from respiratory failure, or get a tracheostomy and use invasive artificial ventilation, and most likely die within the next 5 to 8 years from pneumonia.
I do not accept either of those choices. It is not that I am afraid of death; to the contrary, I strongly believe that I am not afraid to die. Rather, I am saddened by the prospect.
My arms and hands are already paralyzed, and my breathing is severely compromised. I currently use DragonDictate to type on the computer, and as my voice begins to fail, I am switching to an eye gaze tracker. I am in a power wheelchair, and we have moved into an accessible home. Technology holds the only hope for a person with ALS, where medical science has all but given up. I look forward to a day when, even if we have not cured all diseases, at least we have tackled this, the living nightmare that no one should have to endure.
Thus, I come to this prestigious circle of like-minded people, asking you for help. Life insurance, the usual method for funding one's cryopreservation, is out of reach for me, with the diagnosis of a terminal illness. Likewise, it is not an option for me to self-fund it, both because of the current and upcoming medical expenses, and to ensure that my family is provided for after I have gone on. I have blogged about our financial situation at http://aaronwinborn....ial-needs-trust but it is out of date, as on top of all of our expenses, I am now applying for disability under Social Security, and Medicaid, which has rather severe restrictions on income and assets.
Thank you for considering my situation. I hope you find it in your hearts to help us out.
You can read more about amyotrophic lateral sclerosis (ALS), a.k.a. "Lou Gehrig's Disease, at this link.