2013 Society for Venturism Charity Campaign

Dying Wish

In 2001 a young man interested in healthy eating and supporting community work and activism met his soul mate at a food co-op. It was the beginning of a deep and responsible love between the two of them as they chose to build their lives together and planned to bring children into the world. In 2003 they welcomed their first child, amazed at how much more love they could feel-they naturally became nurturing parents who took joy in teaching their child about the world. In 2010 they welcomed their second child; all in their lives was going well, but their world changed drastically before their second baby was even a year old. On March 3rd of 2011 the dad, Aaron Winborn, age 43, was diagnosed with Amyotrophic Lateral Sclerosis, commonly known as ALS. He threw himself into researching the disease, looking for any ways that he could fight it; sadly they discovered he had an aggressive terminal form of the disease that would only leave him with a few years of life.

His wife, Gwen, did all she could to help him, to help their children and learn how to incorporate this horrifying disease into their lives. They went through grief stages initially, Gwen said, “He was a young guy with young kids, who was doing everything right and just had a horrible diagnosis with one outcome. He was an upstanding citizen who liked to take his kids to the park and museum, a computer geek, who liked to play the piano and the flute—this could happen to anyone, you can do everything right, eat healthy, exercise, not smoke and still come down with a terminal illness at a young age.”

They quickly realized they’d need to move from their two-story home, and were able to find a ranch style home that would accommodate his wheel chair. He continued to work as long as he was able; he had been the primary income earner but had to leave his job as the illness rapidly progressed. Currently they are living off of Gwen’s income as a social worker. After some initial denials, and after friends started a letter writing campaign to the state on their behalf, they are still waiting for disability income to come in. It will be a minimum of six months from now till it will come through. They have applied for a Pennsylvania state Medicare waiver to help provide for care in the home but that has not yet come through. As Aaron lost his ability to care for himself they started to need nursing help. The ALS association has given them a grant for ten hours a week, but they have to pay the rest out of pocket. Gwen reduced her hours at work in order to have Friday through Sunday to care for him; they require a nurse for Monday through Thursday and still have daycare costs for their two year old along with the mounting medical bills. They have found generous volunteers in their area who help them with some appointments, meals, rides, childcare and such—just not actual ongoing nursing care. Their family went through an enormous amount of changes in a short amount of time, while always keeping in mind that they needed to both be there for their children.

Today Gwen says she helps other families who have been recently diagnosed by letting them know, “The initial pain and shock gets better as you come to terms with the reality, it doesn’t get easier, it is still hard but you learn how to deal with the constant changes. The disease is degenerative so when you feel like you have tackled a problem then you are on to the next one.” Now the family has been living with the disease for about two years, and sadly, from month to month, Aaron has been falling more rapidly into paralysis than expected.

Their first child, Ashlin, was just 7 when he was diagnosed –today, at age 9, she is incredibly helpful, but also misses her dad. She remembers the way he used to be when they could build things together, do crafts and play. Her mother says, “She has a lot of sadness of losing the things they used to share. We try to keep some normal kid things for her, but it is hard. She is such a good kid, so caring and conscientious-she is dealing with it as best as she can. We’ve never lied to her, we’ve always shared the information we can-in an age appropriate way.” Any kid who has a parent with a degenerative illness struggles, they remember when their family had more time, when things were normal- but learn how to adapt to the new reality. Aaron and Gwen both worry that their youngest girl, Sabina, age 2, will not get the opportunity to have any memories of her father at all.

Now Aaron is on a bipap machine day and night, a machine that forces air in and out of his lungs since his diaphragm muscles have atrophied and will not work on their own. He can talk, but it sounds like he is talking with a stuffed nose, and it takes a great deal of effort. First after diagnosis, he lost his ability to move his arms. Then his hearing became affected. A majority of ALS cases have cognitive problems, such as the ability to process language or the onset of dementia. In Aaron’s case, he lost the ability to understand music and became unable to understand speech over phones—the voices, as he puts it, “Sound like Charlie Brown’s teacher.” In November of 2012 he wrote on his blog, “I am the father of 2 young children, and last year, I was diagnosed with ALS. This disease has already wreaked havoc in our lives, as it has left me without use of my arms or hands, and with a severely compromised breathing capacity. The best is yet to come, however: I will become increasingly dependent on my foot-control power wheelchair for mobility as the atrophy in my legs and feet continue; as my swallowing and speech continue to decline, I will need to be fed through the feeding tube that has already been implanted, and I will only be able to communicate with the eye gaze tracker hooked up to my computer; and I will soon need to decide whether to die or to accept a locked-in state with invasive artificial ventilation.”

Aaron has been aware of cryonics for about three years after reading Ray Kurzweil’s book, The Singularity is Near. Last year, the year after his diagnosis, as he was doing everything humanly possible to beat the odds, he slowly felt his body falling towards a locked-in state. He had immediately thought of cryonics but found that life insurance, the normal way to cover the costs, was way out of reach. With all the mounting costs of care, he couldn’t think of a way he could set up cryonics arrangements- until he read a story about Kim Suozzi and the Society for Venturism. He decided that he might have a chance if he contacted the Venturists. He wrote to see if he could be considered for a Cryonics Charity Campaign. The board, after reviewing his medical history and his family’s financial situation, and talking with his family, voted to take him on as the 2013 Cryonics Charity Recipient.

His breathing score, as of January 2013, is at the point where they would often consider an invasive way of breathing, such as a tracheostomy. The concern is the C02 gas in his blood; if it stays low enough he can remain on the bipap machine- if it gets too high, he’ll need the tracheotomy. His condition is borderline right now, as the threshold is 50% concentration, and in November of 2012 he was at 47%. If it runs higher than 50%, his body will not be able to exhale enough through his lungs –its anybody’s guess when that would happen. A pneumonia, bronchitis, or increase in C02 could send him to the hospital. They are worried that if he has to go onto a ventilator before the care from the state comes through, it will be an exorbitant amount of money that they are unable to afford. They are trying to do everything they can to stay in their home, as they feel that is in the best interest of their children. They simply do not know how much time he has left, and Aaron is hoping he can have the peace of having cryonic suspension arrangements in place.

Gwen supports him in his decision to do cryonics. She recognized it is very important to him saying, “It is something he has been passionate about for a long time.” Out of her love for him, she is trying to help fulfill his wish and she knows he would do the same for her if their roles were reversed. “It is important that I can do what I can, to support what is meaningful for him,” she started saying but then paused. Attempting to compose herself as she tried to not become emotional, she continued, “He is, of anyone I know, a person who I’d say has always loved life and I don’t meant to say that tritely, it is true. He is a person who is excited to get up in the morning and has a million things to do. He doesn’t mess with the trivial or get sad about things that might bother a lot of people. He sees the best in others and sees what is important.” She paused again, before finishing, “I think it is important for me to honor that, I’m sorry to get all choked up.” Gwen took the time out of her busy and highly scheduled life to find a time when their children were away, so that she could help Aaron communicate over the phone with the Society for Venturism, saying she would do whatever she could to help his campaign to raise funds for cryonic suspension. Although it is a hardship for them with all they have going on they are looking at how they can get five thousand to give towards the fund.

Kim Suozzi heard of Aaron when he contacted the Society for Venturism in late October of 2012, when he was accepted as a new charity recipient she contacted him in November saying she wanted to help promote his campaign. She hoped that people who supported her would also support him; she was very optimistic about Aaron being able to raise enough funds for Cryonics Institute or Alcor. She offered to write about his campaign on Reddit and include a link to his donation page but on December 13th of 2012 Kim wrote to Aaron apologizing for not having been able to help more, explaining that her condition had worsened. She encouraged him to continue to raise the funds and to keep his options open for Cryonics Institute or Alcor. He thanked her and told her to stay strong. She continued to fight her cancer, still trying to enroll in treatments until the end, but lost her battle and passed away January 17th 2013 at age 23. Kim was successfully cryo-preserved at Alcor Life Extension Foundation where her family and friends hope that some day in the future if science, medicine and technology has advanced enough she could be revived, cured, and given a chance to finish her life.

Aaron and his wife have reached out to the cryonics community to help him secure cryonic suspension arrangements. When they first met and fell in love, they found they had similar understandings about death- they felt peace with it and were not afraid of it, even in the face of this disease. As Gwen said, “A lot of people get depressed with this disease, facing your mortality, facing paralysis—but Aaron is not depressed. He still wakes up in the morning loving life and getting going, as hard as it is now for him to get going. Cryonics for him, its one of his passions, one of those things that wake him up excited to start his day and be excited about his future. He still enjoys life even as hard as it is now. Aaron had mentioned to me that Kim had contacted him and offered to help—oh my gosh, he was so excited by Kim contacting him: he thought he could actually get cryonically preserved.” Aaron sent in his first letter to the Society for Venturism, which is listed below this story; in it he pled, “I come to this prestigious circle of like-minded people, asking you for help.” He ended his letter with, “Thank you for considering my situation. I hope you find it in your hearts to help us out.” His wife too, over the phone, thanked the cryonics community, and was very hopeful that the funds can be raised to grant her husband his dying wish.

All donations to the Society for Venturism’s Cryonics Charity Campaign for Aaron Winborn will go to the cryonics organization that he sets up arrangements with; they do not go to the individual. Please consider giving, as even small amounts will help at this stage. It is not known how much time he has, and it would be wonderful to give him and his wife the peace of mind they would receive from knowing he has cryonics arrangements in place.

Thank you,
Shannon Vyff
Society for Venturism Board Member and Outreach Coordinator
LongeCity Board Member, Lifeboat Foundation Advisor, contributing author to
The Scientific Conquest of Death, author of the cryonics family adventure
21st Century Kids, Alcor and Cryonics Institute Member

A Letter that Aaron Winborn Sent to the Society for Venturism November 2012:
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.

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.

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.com/blogs/aaron/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.com/blogs/aaron/special-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.