Help Kani Restore Her Eyesight
Donation protected
UPDATE: Surgery date changed from August 31st to September 14th.
We don't realize how valuable our health is until we're stripped of it and left unable to do even the most basic, daily functions. Too often do we take the simplest things for granted. Ironically, this has been an "eye-opening" experience for me. I'm not trying to create some sob story to gain pity but hope that my story will give you more insight to why I've decided to ask for your help and why I have resorted to stem cell treatment. And I hope that this will remind everyone to appreciate and value what you have in life because those things can be taken at any moment, and to take care of your health and well-being...whether it's physical and/or mental health. Thank you for taking the time to read and I wish everyone good health and quality of life.
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I'm not very good at opening up about my struggles nor asking for help and feel very vulnerable (and quite embarassed) exposing all this in such a public manner...even my own family doesn't know how it's affected me, internally. On the surface, they clearly see my struggles and how it's physically and functionally impaired me but they don't know the severity of how it's affected me mentally, emotionally, and psychologically. I also put on a more positive exterior to them than what's truly hidden beneath the facade. They havent seen me cry since I was a kid and I have a hard time crying in general until it becomes too unbearable to suppress...even if I'm deeply terrified or sad. Don't get me wrong, my family and I are close but we don't talk about our problems or struggles. I don't like to burden others and tend to deal with problems alone, so I've built this wall of isolation and it's been really lonely. But I am now in a desperate situation where I am reaching out for help through this fundraiser. I sincerely feel terrible for even asking and I still feel torn up inside about taking someone else's money. I'm not sure if people actually even read this part but here goes...
Due to an accident, I went blind in both eyes a few years ago and had 8 total invasive surgeries to restore my vision. Things looked hopeful and brighter for a little while but it was short-lived and last year's COVID outbreak caused a relapse in my eyes' healing progress which ended up in severe optic nerve damage and permanent blindness in my left eye with only 10% vision, and my right eye having less than 50% vision remaining. If I only look out of my left eye then I can't even see my own hand or reflection. Everything just goes almost completely dark, like everything in front of me just vanished. The peripheral vision in my right eye has gotten weaker and it's only a matter of time before I lose vision in both eyes completely. When I was temporarily blind in both eyes the first time around, it was the loneliest I'd ever felt...and I'm a pretty introverted person. Knowing that this time could be permanent is the most scared I'd felt since it all started. The first time I temporarily went blind in both eyes, I remember dropping a piece of chicken on the floor and, rather than taking 30 seconds to find it and pick it up, it took me nearly 20 minutes of aimlessly searching on my hands and knees before I found it lying right next to the table on the floor.
This is the first, and hopefully only, time I will ever need to ask for any personal donations. I've started a GoFundMe to raise money for my upcoming stem cell clinical trial treatment (linked below) to try to, hopefully, not only restore my vision but also reverse the damages by regenerating healthy cells and optic nerve fibers. I want to be transparent with everyone on the details: I finally have medical insurance but it does not cover the costs of any stem cell treatment. It is $19.6K to participate and there's no promise that it will even work. I don't want to sit here and say that your donation will guarantee that this trial will be a success. I may have amazing results, I may only have slight improvement, or I might not have any improvement at all. Therefore, I don't want anyone to feel any pressure or obligation to donate if you don't feel comfortable doing so due to the uncertainty of the outcome. If, for any reason, they decide that I am no longer eligible to participate then I give you my word that I will return everyone's donation, in full. The trial begins on August 31st of this year.
The stem cells will be obtained from my own bone marrow and they are NOT embryonic (from aborted fetuses). My family and I have spent over $50K, out-of-pocket, to pay for my last 8 surgeries because I did not have insurance at the time and I can't afford these out-of-pocket expenses anymore. So, this is why I've decided to ask for your help. My family is very supportive and will be here for whatever I need but my parents are very old (82 & 73) and aren't good with internet research (they barely know how to text on their phone). So, I've had to research into everything by myself and it's taken a toll on me while juggling the responsibilities of regular work as well. But I know that if I don't do the research myself then no one else will. My family has done so much for me throughout my lifetime and I love them very much. They're the most important people in my life and I feel a tremendous amount of guilt that they have to take care of me in their old age instead of me taking care of them. And I hope that, one day, I'll be able to take care of my parents again.
Due to an accident, I went blind in both eyes a few years ago and had 8 total invasive surgeries to restore my vision. Things looked hopeful and brighter for a little while but it was short-lived and last year's COVID outbreak caused a relapse in my eyes' healing progress which ended up in severe optic nerve damage and permanent blindness in my left eye with only 10% vision, and my right eye having less than 50% vision remaining. If I only look out of my left eye then I can't even see my own hand or reflection. Everything just goes almost completely dark, like everything in front of me just vanished. The peripheral vision in my right eye has gotten weaker and it's only a matter of time before I lose vision in both eyes completely. When I was temporarily blind in both eyes the first time around, it was the loneliest I'd ever felt...and I'm a pretty introverted person. Knowing that this time could be permanent is the most scared I'd felt since it all started. The first time I temporarily went blind in both eyes, I remember dropping a piece of chicken on the floor and, rather than taking 30 seconds to find it and pick it up, it took me nearly 20 minutes of aimlessly searching on my hands and knees before I found it lying right next to the table on the floor.
This is the first, and hopefully only, time I will ever need to ask for any personal donations. I've started a GoFundMe to raise money for my upcoming stem cell clinical trial treatment (linked below) to try to, hopefully, not only restore my vision but also reverse the damages by regenerating healthy cells and optic nerve fibers. I want to be transparent with everyone on the details: I finally have medical insurance but it does not cover the costs of any stem cell treatment. It is $19.6K to participate and there's no promise that it will even work. I don't want to sit here and say that your donation will guarantee that this trial will be a success. I may have amazing results, I may only have slight improvement, or I might not have any improvement at all. Therefore, I don't want anyone to feel any pressure or obligation to donate if you don't feel comfortable doing so due to the uncertainty of the outcome. If, for any reason, they decide that I am no longer eligible to participate then I give you my word that I will return everyone's donation, in full. The trial begins on August 31st of this year.
The stem cells will be obtained from my own bone marrow and they are NOT embryonic (from aborted fetuses). My family and I have spent over $50K, out-of-pocket, to pay for my last 8 surgeries because I did not have insurance at the time and I can't afford these out-of-pocket expenses anymore. So, this is why I've decided to ask for your help. My family is very supportive and will be here for whatever I need but my parents are very old (82 & 73) and aren't good with internet research (they barely know how to text on their phone). So, I've had to research into everything by myself and it's taken a toll on me while juggling the responsibilities of regular work as well. But I know that if I don't do the research myself then no one else will. My family has done so much for me throughout my lifetime and I love them very much. They're the most important people in my life and I feel a tremendous amount of guilt that they have to take care of me in their old age instead of me taking care of them. And I hope that, one day, I'll be able to take care of my parents again.
I truly enjoy the work that I do and it's been a wonderful distraction for me to get my mind off of things, but I know that I haven't been able to work at my peak performance due to my health. And work has been one of my biggest passions and distractions to help me cope with everything.
This treatment is my last resort as there's nothing else that has the possibility of restoring my vision due to optic nerve damage. I've fought tirelessly for the last 4-5 years and I'm just so exhausted now. This has taken so much from my life already and I really don't want it to strip anymore years from my life. I am almost completely blind in my left eye and have less than 50% vision remaining in my right...and it's only becoming weaker and weaker. I haven't been able to enjoy the sunlight without eye pain so I avoid it. I don't experience as much severe eye/head pain as I used to but it still surfaces every now and then. I've learned to adjust and live with it to the best of my ability but it's become increasingly difficult. As time goes by, my world looks dimmer. I fear that each day I open my eyes...it will eventually be to total darkness. I look forward to sleep because dreams are my only escape as it's the only time when images are the most vivid for me, even if they're only temporary. I hope that this treatment will help make my days a little bit brighter, visually and mentally. I want to fully enjoy my life and the time I have with my elderly parents while they're still on this earth. I want to laugh and spend time with my nephews and niece while they're still young and think I'm cool, lol.
We don't realize how valuable our health is until we're stripped of it and left unable to do even the most basic, daily functions. Too often do we take the simplest things for granted. Ironically, this has been an "eye-opening" experience for me. I'm not trying to create some sob story to gain pity but hope that my story will give you more insight to why I've decided to ask for your help and why I have resorted to stem cell treatment. And I hope that this will remind everyone to appreciate and value what you have in life because those things can be taken at any moment, and to take care of your health and well-being...whether it's physical and/or mental health. Thank you for taking the time to read and I wish everyone good health and quality of life.
Main Website:
Patient News Article 1:
Patient News Article 2:
Patient News Article 3:
Patient News Article 4:
List of Publications 1:
List of Publications 2:
Organizer
Kani Nguyen
Organizer
Fort Lauderdale, FL