Help Norbert to live a life without pain, humiliation, fear and suffering!

  • US$2,505.00
    Donated So Far
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Hi,

My name is Norbert, I am a 37 years old disabled person, asking for help, raising funds in the hope that I could live a life without pain, humiliation, fear and suffering.

In the following I will share My:

  • Story and background, past and present.
  • Severe disability and its sequelae(complications).
  • Current situation, struggles and suffering, in detail.
  • Goal for the fundraiser and My plans with the raised money.

I also have to warn every reader that the following content might prove too much for some people, mentally shocking, depressive, raw, explicit, not for the faint of heart.

My story and upbringing:

I was born in Szeptember 1985; in a small bordertown of Hungary A few years later when I was two years old, I got diagnosed with Duchenne Muscular Dystrophy (DMD).After receiving the bad news, my parents decided they don't want the struggle that comes with a child with such a severe disorder.They gave up Me to the foster system, I never saw them again. I had to move from institution to institution as I grew older. I can proudly say that despite every obstice, I finished My primary and secondary-school studies. As my illness progressed, I slowly lost the ability to use a wheelchair. Ever since I was 18 years old, I've been figuratively chained to my bed, trapped between four walls. Later, soon after I turned 21, I had the opportunity to move in with the family of one of the nurses. I received "home care" for almost 16 years, up until July of this year.

My disorder and the complication that comes with:

As I mentioned before, I'm born with a progressive disorder called Duchenne muscular dystrophy (DMD); A genetic disorder characterized by progressive muscle degeneration and weakness. Basically every muscle in the whole body slowly wastes away, dieing. Usually leading up to a death caused by the deterioration of respiratory muscles or heart. At the moment I'm at the stage where I already can't move any part of My body; Except the right wrist that has a few inches of movement, allowing me to barely use a computer mouse.

One of the symptoms or complications associated with DMD is Scoliosis; The presence of an abnormal lateral curvature of the spine. This causes the organs to shift from their original, normal place.They push against each other, causing a high degree of pain. Due My extremely curved and twisted spine, almost every activity requires a very specific and complicated pose that I experimented with and developed over the last 20 years. These activities include: eating, drinking, the use of My laptop, micturition (peeing), defecation (pooping), and many other major movements. Often people with this disability also have Cognitive Impairment. I consider myself lucky to not have this issue on top of everything else, I'm in full possession of My faculties.

My current circumstances and everyday struggles:

On July 26th I had such severe abdominal pain that I had to call an ambulance and rush to the ED. I was diagnosed and treated, through the next week, for severe constipation, dehydration, and a few other medical issues as a result of insufficient care. It became evident that the type and degree of care I'm receiving, no longer enough to maintain a relatively safe state of life. Once again I was put in the social system; In a temporary institution for people who cant take care of themself. Either because they are recovering from a serious illness, surgery, or because they are in the last stage waiting to pass away. Around half of the patients are also suffering from dementia or other mental issues. At the moment there are 46 patients in rooms with 5 to 8 beds for 3 female nurses, with 12 hours shifts. The staff is exhausted, impatient, in a state of constant hurry. As a result, sadly we the patients are suffering. I myself have two serious issues which drastically impact the quality of My life:

At this point I have to warn the reader again, the following content might prove graphic, explicit!

First, that they are not willing to use a Bed Urinal, instead I'm ordered to urinate in the adult diaper. The result of that is always the same. The urine leaks out of the diaper, under Me. I have to lie in My own piss covered from toe to head, sometimes for even 8 hours long. Just for clarification, I can hold my urine, I'm not suffering from incontinence. The nurses just simply cant or dont want to bother with the use of the Bed Urinal. This also comes with the pain that is the result of the urine being in contact with My bedsores. On the mental side of things, I have to watch and endure as My last shred of dignity is taken away from Me. Most nights I just quietly cry myself to sleep.

Second, is the amount of food that is provided, and the way which I'm forced to eat and drink. The breakfast and dinner usually have no more than one slice of buttered bread with a single slice of topping, and a cup of sugarless tea without any bland. Lunch for me is always a mushy diet, since the nurses are not willing to spend the time to sit Me up. I have to eat lying on My side, which severely limits what I can eat. If they would take the effort and sit Me up, I could literally eat anything just as a healthy, able bodied person would do.

The goal of this fundraiser, and My plans with the raised amount:

Since I can't work and never was able to; My only income is the disability pension which is 30.000 HUF/month, in the ballpark of 78 USD/month. The cheapest non-governmental institution that hopefully can provide the care I need, costs 160.000 HUF/month and a one time deposit of 500.000 HUF. I would only need to pay the deposit, the government would make up the missing monthly payment with My income. The goal of this fundraiser is to get the best possible care.

How do I intend to spend the raised money if the goal is not met?

I will spend on medical supplies that can help ease somewhat My everyday struggle.

How do I intend to spend the raised money if the goal is over achieved?

I will look for an institution with the best possible quality of care.

What can I offer in return for the donors?

My lifelong and eternal gratitude, with the knowledge that even the smallest amount is a massive help for Me.

Closing words:

If you are not in a position to donate but still want to help, the best way is if you help to reach more people. Share My Story and fundraiser on the known social platforms; Facebook, Twitter, Instagram, TikTok, LinkedIn, Telegram, or send an email to a friend who might be able and willing to help.




Organizer

Donors

  • Mark Kalinovits
  • Donated on Oct 11, 2022
$100.00
  • Anonymous
  • Donated on Oct 05, 2022
$200.00
  • Samantha Stimpson
  • Donated on Sep 09, 2022
  • I hope you get to a better facility. God bless ❤️

$10.00

No updates for this campaign just yet

Donors & Comments

36 donors
  • Mark Kalinovits
  • Donated on Oct 11, 2022
$100.00
  • Anonymous
  • Donated on Oct 05, 2022
$200.00
  • Samantha Stimpson
  • Donated on Sep 09, 2022
  • I hope you get to a better facility. God bless ❤️

$10.00
  • Anonymous
  • Donated on Sep 03, 2022
$200.00
  • Anonymous
  • Donated on Sep 03, 2022
$50.00
$50.00
  • Anonymous
  • Donated on Sep 03, 2022
  • GG r/hungary

$100.00
  • Anonymous
  • Donated on Sep 03, 2022
$50.00
  • Anonymous
  • Donated on Sep 03, 2022
Amount Hidden
  • Anonymous
  • Donated on Sep 03, 2022
Amount Hidden
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Followers

4 followers
Zsombor Markus
Elena Tiran
jack breckner
Tibor Tóth
US$2,505.00
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