Hello, my name is Jacob Haendel and I am 32 years-young. While my ongoing recovery from locked-in syndrome and Toxic Progressive Stage 4 Leukoencephalopathy doesn’t define who I am, it has consumed my life for the past four years. I am looking for $400,000 to cover my uninsured needs for the next few years, including daily PCA (personal care assistance), physical therapy (PT), neuro-occupational therapy (OT), and general cost of living (rent, utilities, food) until I am (literally) on my feet, with full use my hands, have overcome my ataxia (loss of control of bodily movements), and able to perform daily living tasks without assistance. I hope to become part of the productive workforce at the end of four years.
Many of you already know my story but for those who don’t, here is a very brief glimpse. Before I got sick at 28 years young, I was a music-loving, eccentric, adventure-chasing, head chef who lived life too fast. Life in the fast lane took a turn for the worst and on May 24, 2017, I was admitted to the hospital for what appeared to be stroke-like symptoms. After an MRI, I was diagnosed with a terminal progressive disease and told I had six months left to live. Here I am at 32 and I’m not only a survivor of Locked-in Syndrome but I am the only documented recovered case of Acute Toxic Progressive Stage 4 Leukoencephalopathy. In plain English, I have sustained a traumatic brain injury that initially cut me off from the world by trapping me in my own body without the ability to move or communicate. I have progressed through hours of dedicated hard work and amazing care so that now I am able to communicate and move but my hands and body shake uncontrollably and I have trouble speaking, swallowing and performing literally every single normal daily task.
November 2017: Locked-in on my deathbed
April 18, 2019: No longer locked-in, learning to eat foods (kinda...)
The goal of my recovery is to be able to live independently and function in the world as a “normal person” again. Additionally, I want to share my story about overcoming addiction and surviving a terminal progressive disease. My hope is to motivate others who may be facing any challenges in life and inspire people going through all types of recovery. It’s been a long road and there are plenty more miles ahead of me, but I have made amazing progress and am looking forward to a full recovery.
December 1, 2020 marked a huge milestone for me. I was discharged and finally sent home after three years in the hospital. Coming home has been equally as miraculous as my recovery. Breaking out of the chaos of institutionalized life, eating healthy home cooked meals, surrounding myself with my own possessions and having the freedom to just be myself has been instrumental to my recovery process and mental health. I would just like to say being back in the community and being able to enjoy the simple things in life like going outside or picking out a piece of fruit is absolutely amazing!
January 7, 2021 After Achilles Surgery January 20, 2021: First time standing
Since moving home, I have relied on the funding from family, friends, insurances and various homecare programs to support myself. Unfortunately, I am out of funds and am struggling to keep myself properly cared for and I am worried that without the amazing care I currently receive, I won’t be able to recover. I need to raise $400,000 to cover the costs of living as well as my daily uninsured medical expenses and the personal care assistance I require for my recovery for the next year.
December 30, 2020 Picking up a "cup" and "drinking" without assistance
I am extremely optimistic and determined to meet my aforementioned recovery goals. I’ve astounded medical professionals, friends, family and even myself and continue to do so every day. I am beyond grateful for the people who have already helped me in so many ways and it pains me to start a GoFundMe but here I am. I really look forward to no longer being a patient and moving forward with my life so that I can help others in all capacities and through all different types of recovery!
I want to thank everybody for all your support and help through this process! In many ways, my sickness and recovery has humbled me and given me a new perspective on life. I have met countless individuals whose patience, dedication, kindness and selflessness have impacted me to my core. Despite some people’s grim outlook on the world, I’ve seen first-hand the generosity and extreme kindness complete strangers are capable of, and I am forever thankful. There is no way I could have come so far without the love and support from everyone around me.
I will be posting updates on this GoFundMe page as well as my YouTube Channel and my website!
Thank you for your support and taking the time to read my story. I look forward to paying it forward.
My YouTube Channel
The Guardian Article
The Guardian Podcast
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