The Ugly Truth Behind #ALSicebucketchallenge
Imagine being stuck in a room 24/7, bed ridden, unable to leave. Unable to walk. To talk. No TV, no company, no socialization.
Imagine seeing your family for 15 minutes per day, through a window. Unable to touch them, to hug them. Unable to talk to them.
Imagine being unable to breathe, imagine a machine breathing for you.
And imagine having to spend the rest of your life like this.
It sounds like a nightmare, doesn’t it? Unfortunately, for one women, this particular nightmare is a reality.
Unless we do something about it.
On June 18th, 56-year-old Nada Stojkova lost the ability to breathe. Nada, a devoted wife, mother, and grandmother, lives in Macedonia, a small Balkan country with very poor health care. She was transferred to an ICU in Skopje where, after eight days, she was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, or Motor Neuron Disease. This is the disease the Ice Bucket Challenge raised awareness of back in 2015.
Nada is now dependent on life support for every breath she takes.
As many ALS patients would tell you, ALS is a monster, the worst of the worst. There is no cure and a 100% fatality rate. 90% of ALS patients are given from 2-5 years to live. ALS is a disease that turns your own body against itself, it causes your body to attack itself. To wear out its muscles until you can no longer move your hands. Your arms. Your legs. Eat. And ultimately breathe.
Unfortunately, the health care system in Macedonia lacks the infrastructure to properly care for someone in Nada’s condition. There are no effective support systems, nursing homes or hospices. She is currently forced to remain at the hospital’s ICU where life is very hard. Visitations are limited to 30 minutes a day where Nada’s family can only see her through a window. The rest of her time there is spent in a room with no books, no TV, no socialisation – No mental stimulation at all!
Nada has been trapped in this situation for over a month now. Her family would like to ease her suffering by bringing her home where they can care of her themselves. Please help us give her the opportunity to live out the rest of her years with as much dignity as possible, with her husband, daughter and beautiful granddaughter of 11 months by her side.
Health insurance does not cover home care and Macedonia’s standard of living is on the lower side, so the family’s salaries can only cover a small percentage of the projected costs. They are hoping that the kindness of complete strangers will be enough to raise the funds needed to bring Nada home.
Nada is the most devoted wife and mother ever, and even though going through this must be terrifying, she is still trying to take care of her family, even if it’s a piece of advice given through a hospital window. Nada has been in the ICU for over a month now, and as utterly difficult and terrifying this past month has been, Nada’s strength and positive attitude is still unwavering. Despite her body failing, her mind is as beautiful as ever.
Sadly, this is not the first time tragedy that has struck the Stojkovis in recent times. Seven years ago the family was devastated when they lost their eldest child, Ivan, to Leukemia at the age of 27. Following this, Nada finally started to feel some solace when her daughter gave birth to her first granddaughter, Ivana, on 25th of August 2018.
Now the chance to celebrate Ivana’s 1st birthday has been taken away from her by this horrible disease. Please help her to celebrate her next birthday at home, with all of her family by her side.
ALS is a costly disease - a lot of expensive equipment and technology will be needed for her family to care for her at home : 2 ventilators (breathing machines), a hospital grade bed, a power wheelchair, cough assist and suctioning machine, nebuliser, assistive technology, monthly expenses, etc.
So every penny is appreciated, every prayer is welcomed.
When Nada passes away, the family would like every piece of equipment, as well as any funds remaining, to be donated to others in similar need.
This page has been set up by family friends, Spasija Delova Speak and Patrick Speak, on behalf of the Stojkovis. We would like to thank you for your time, help and generosity.
APEL ZA POMOSH!
Na 18 juni 2019 g. Nada Stojkova prestana da dishe, po shto e prenesena itno na KARIL i od togash e na aparat za dishenje. Po 8 dena ja dijagnosticiraa so ALS (amiotrofna Lateralna Skleroza), bolest koja e 100% fatalna, muskulite na teloto otkazhuvaat vo period od nekolku godini, se dodeka ne dojde do poslednata faza, koga lichnosta ja gubi sposobnosta za dishenje i vekje ne mozhe da prezhivee bez mashina. I dodeka teloto otkazhuva, umot ostanuva bistar do samiot kraj. Otkako ednash ke bide stavena na mashina za dishenje, lichnosta so ovaa bolest mozhe da zhivee so godini.
Takov e i sluchajot so Nada. I dodeka vo stranstvo domashna nega na lichnost so aparat za dishenje ne e nishto novo, ovde kaj nas e nauchna fantastika. ALS e retka bolest i zdravstvoto ni e celosno nepodgotveno za nea.
Poradi ova, Nada e primorana da go pomine ostatokot od svojot zhivot na KARIL, kade nema nikakva socijalizacija, nitu pak eden obicen televizor. Na nejzinoto semejstvo i e dozvoleno da ja vidat samo 30 minuti vo denot, tocno od 12 do 12:30, i toa preku prozorec, ne vo zhivo. Otkako e na KARiL, Nada ja nema videno svojata vnuka, koja za nepoln mesec ke polni edna godina. Taa nema da bide vo moznost da go proslavi nejziniot 1-vi rodenden.
Semejstvoto saka da ja zemi doma i da se grizhi za nea, no za toa se potrebni mnogu parichni sredstva, okolu 110 000 evra za nabavka na dva polovni aparati za dishenje, elektrichna invalidska kolichka, druga propratna oprema i mesechni troshoci za grizha.
Ajde site da se sobereme i zaedno da i pomogneme na Nada da si dojde doma, pokraj svojata familija, da se raduva na vnukichkata dodeka seushte mozhe!