Going blind due to rare disease. This is not over

https://patch.com/new-york/southampton/man-20-told-hes-going-blind-months-not-end?fbclid=IwAR3G4Vq7ydc2L2XvqgiMYgCJOComHm9vTEKupvG51T76twt94e5UtKlX3PI

Update: January 25, 2023, Since this was originally posted the disease has spread to my other eye, and I can no longer drive, read texts, or recognized faces. I am hoping to enroll in the clinical trial at the Wills Eye Hospital in PA soon. Thank you for any assistance you can give me.

Chris

Original text:

Earlier this month I was diagnosed with an incredibly rare genetic disease called "Lebers hereditary optic nerve disease," and I will be blind within 6-12 months. The nerves in my eyes are dying rapidly. At the moment, I can still drive and stuff because it has not spread to my left eye yet.

Around 3 months ago I noticed my vision getting slightly worse and worse, but I just assumed I needed a new prescription for my glasses. So I thought nothing of it, then around 3 weeks ago I woke up one morning and I couldn't see much of anything out of my right eye, so I went to the emergency room and the doctor couldn't for the life of him figure out why I was no longer able to see out of my right eye. He saw no visible damage, nor was my eye pressure abnormal, so the following day I went to the eye doctor and they gave me an official diagnosis for the disease.

Only 10 thousand people worldwide suffer from the disease and because of it's rarity there has never been an official cure found. However, they have an experimental treatment at the university of Miami where they inject peoples eyes with other peoples genes to attempt to cure the disease.

I am no longer able to see out of my right eye, and within 6 months there's a 90% chance it will spread to my left eye.

At the age of 20 I will be blind. I never thought I would ever being saying those words. Nobody should ever have to say those words.

I will be going through with the experimental treatment where my eyes get injected with the genes. If the treatment fails the only way to prevent the disease from spreading to my left eye is nothing but luck-something I don't have very much of.

I wouldn't wish this disease on my worst enemy. I'm counting down the days that I will still be able to see and do things that I enjoy. I currently read about 3 books a week. That's one thing I will no longer be able to do. There will be many things I will no longer be able to do.

I don't feel like a victim. Sometimes things just happen. Maybe I'm just in shock and am indeed very upset, but I doubt that. I've never been upset about much of anything in life.

Maybe it's just my conscious that I'm after. Maybe I'm painfully unaware about the fact that I will be blind soon.

I had a dream last night that I would wake up one day and my vision would be restored and that life would go back to normal, but that's all it was- a dream.

To make things even more devastating, my mother died suddenly from a heart attack. She died in my father's arms earlier this week,

With the loss of my mother and the loss of income in general I have no means to pay for eye treatments I didn't get to say goodbye

I didn't get to say I loved her one last time

I didn't get to say thank you one last time

Her loss was tragic.

I also lost my grandfather who was my best friend. Mitchells passing was heartbreaking. He survived covid, severe pneumonia, several infections, etc. He spent 6 months in a nursing home recovering. He was actually almost fully recovered and ready to come home in a few weeks. I was excited that I would soon be able to see him again.

Then, out of nowhere in the early hours of Wednesday morning we got the news of his passing.

Over the last few months I would often go down to the wainscot cemetery where my grandmother is buried and pray for his survival.

Mitchell was almost like a second father to me. He did a lot for me growing up. We were incredibly close.

Mitchell never complained about anything, he was never angry, he was always calm.

I'm serious, not once in my entire life did I ever see him express any type of anger.

He was chief of the bridgehampton fire department, he ran a very successful business and he was also in the national guard. During his life he achieved a lot. He accomplished things that 99% of the population could not.

I always wanted to be like him growing up, I always saw him as a true role model. He was someone I looked up to.

I just wish he didn't go like this. He didn't deserve to die in a nursing home that was flooded with covid patients. He didn't deserve to die at all.

He's in a better place now. He is with his wife Kathleen mezynieski, who passed away in 2015. He is with his best friend, his dog "woody" who passed away in 2012. He is with his father Mitchell mezynieski Sr.

It is truly the end of an era for the wainscot community. He was one of the last people who were a life long wainscot local to pass away.

Mitchell, my one promise to you is that I will not let you down. I will not disappoint you. You always wanted the best for me and I will make sure I do my best.

I didn't get to say goodbye

I didn't get to say I loved her one last time

I didn't get to say thank you one last time

My father is all I have left now to guide me in life and he is 68.

I don't think Bruce ever got the credit he deserved. When my mom went blind he took over and did everything for the family. He drove me everywhere I had to go. He went to get groceries. He helped my mom with everything.

Over the last 12 months that my mother has been sick my father was her primary care taker and I find that incredibly admirable.

When my mom first went blind in 2013 my dad could have simply given up but he didn't. He dedicated everything to my mother. There are not many people like that.

My dad never got the credit he deserved, but he never sought credit or validation. All he wanted was a happy family.

My father is retired and cant work and I am going blind due to the LHON disease. Everything is frozen until probate is over and we cant sell any assets if we wanted to. I have no money left to pay fo eye treatments, food, or oil. All of our funds are stuck in probate. We are preparing for a dark winter ahead.