Podržimo Simonidu Rajčević u borbi sa progresivnim MS-om

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Simonidina priča

Simonida se razbolela 2020. godine, samo par dana pre korona virusa, dok je pripremala izložbu Lažni bol u KCB. U isto vreme je spremala izložbu Strelice u Domu omladine. Tada je osetila prve snažne simptome bolesti. Bila je utrnuta od tabana do rebara i tako se ipak penjala na merdevine tokom postavke izložbe. U tom periodu korona je harala, mnogi su bili u karantinu. Prvobitno su lekari mislili da je kičma u pitanju i pomereni diskovi, ali i nakon fizikalne terapije nije bilo bolje. Nakon prve magnetne rezonance glave i kičme shvatila je nažalost da je u pitanju multipla skleroza. U prvom trenutku Simonidi ta dijagnoza nije delovala kao nešto što će zaustaviti njen život i bila je spremna da se uhvati u koštac sa svim tim.

Nakon prvog ozbiljnijeg pregleda u KCS i vađenja likvora, dr je zaključila da se radi o primarno progresivnoj multipla sklrerozi. To je veoma redak oblik MS-a, oko 10 odsto ljudi na svetu sa MS-om ga ima. U trenutku postavljanja dijagnoze Simonida je imala 46 godina i do tada je bila apsolutno zdrava. Lečenje je usledilo godinu dana nakon dijagnoze, kada je primila jedinu registrovanu terapiju za njen oblik bolesti. Nakon tog prvog teškog napada bolesti koji je trajao oko četiri meseca kada nije mogla skoro da hoda sama, da podigne čašu sa stola, da spava, usledio je period boljitka kada se i vratila na posao na FLU gde radi kao redovna profesorka. Počela je da slika u svom ateljeu, da ide redovno na trening i sve vreme je bila na specijalnoj ishrani.

U novembru 2023. godine njeno stanje se brzo i drastično pogoršalo, tada su je i skinuli sa terapije jer na nju više nije reagovala. Godinu dana kasnije, odnosno do novembra 2024. ona nije mogla uopšte samostalno da hoda. U tih godinu dana Simonida je iz kreveta dan i noć tragala za pomoći i dodatnim pregledima i informacijama. Uspela je pronađe vrhunske naučnike i lekare sa Stem Cell Foundation NY, National Institute of Health i Cambridge. Nakon odlaska u NIH u Vašingtonu gde su joj uradili najobimnije analize, nakon rezultata i razgovora sa vodećom dr i istraživačicom na polju MS-a rečeno joj je da su oštećenja sada toliko velika na kičmenoj moždini koja je potpuno atrofirana i istanjena, da nikada više neće hodati i da je bolest progresivna. Trenutno za Simonidu ne postoji nijedna terapija, kao ni medicinska studija koja bi mogla da joj pomogne. Predložena je terapija koju može da dobije u Srbiji ali su jako mali procenti mogućnosti usporavanja progresa bolesti.

Uprkos svemu saveti lekara su da mora da nauči i nastavi da živi u kolicima, sa nadom da bolest neće progresirati istom brzinom kao do sada i oduzeti funkciju u rukama, plućima, govoru i mozgu. Simonida želi da sve to pokuša održavajući duhovno i fizičko stanje što bolje, da nastavi da slika, radi na fakultetu koji joj sve vreme pruža podršku i pomoć, kao i studenti, i da ne odustane od borbe protiv ove okrutne i nepredvidive bolesti za koju trenutno nema nijednog leka.

Kako možete da pomognete?

S obzirom na to da Simonida ne može samostalno da hoda, niti da obavlja svakodnevne osnovne stvari (odlazak u toalet, kupanje, ustajanje sa kreveta), njena partnerka Magda bila je prinuđena da da otkaz nakon 23 godine rada u medijima, kako bi bila uz nju 24 sata dnevno i pomagala joj u svemu.

Potrebne su joj je pomoć i novac kako bi u narednih godinu dana adaptirala životni prostor kako bi mogla da se osposobi i koliko toliko osamostali da se kreće u kolicima, izađe napolje, kao i da napravi stolicu-lift za atelje da je podigne na prvi sprat kako bi nastavila da slika, odnosno radi ono što voli i što je njen poziv, kao i rad sa studentima na fakultetu.

Takođe, pošto Magda trenutno nema posao, ova pomoć će omogućiti i da uz Simonidinu samostalnost, ona počne ponovo da radi, naročito ako dođe do toga da Simonida ne može da se vrati na posao na fakultetu.

Za to joj je potrebno da ima:

Simonidina borba je maraton, a ne kratka trka, baš kao i njena profesija. Osim toga, ova borba nije samo za nju, čega je ona svesna, već se nada da će nekako uspeti da inspiriše i druge ljude da se bore, kao i da pomogne MS saborcima sa kojima je često u kontaktu.

Za više informacija o borbi, posetite Simonidin vebsajt.

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Simonida’s Story

Simonida fell ill in 2020, just days before the Coronavirus pandemic outbreak, as she was preparing the exhibition titled False Pain in the Cultural Centre of Belgrade. Simultaneously she was preparing another exhibition, Arrows in Belgrade Youth Centre. That was when she felt first strong symptoms of her illness. She felt numbness from a sole to her ribcage, yet she was mounting the ladders in this conditions to finish with the preparations for the exhibition. In this period, Corona was at its peak and many people were quarantined. At first, doctors though that this was a spinal condition involving dislocated vertebra, yet the situation did not improve after physical therapy. After the first MRI of head and spine, she realised that this was unfortunately multiple sclerosis. Initially, this diagnosis did not appear to Simonida as something that would put her life on hold, and she was ready to fight.

After the first comprehensive examination in the Clinical Centre of Serbia and liquor testing, the doctor concluded that this was a case of primary progressive multiple sclerosis. This is a very rare type of the condition, and only around 10% of the world’s MS patients have it. When her diagnosis was made, Simonida was 46 and had been absolutely healthy by then. The treatment ensued one year after the diagnosis, and she received the only registered therapy for her type of MS. After the first grave MS attack, which had lasted for four months, during which she almost could not walk on her own, pick a glass of water from the table, or sleep, a period of improvement ensued, when she returned to work to the Faculty of Fine Arts, where she works as a full professor. She started painting in her studio, training regularly and following a special diet constantly.

In November 2023, her condition deteriorated fast and drastically. This was when her therapy was discontinued, as she no longer reacted to the treatment. In the next year, i.e. until November 2024, she could no longer walk independently, yet bed-ridden as she was, she would spend day and night searching for help, additional examinations, treatments and information. She managed to locate the top scientists and medical professionals of the Stem Cell Foundation NY, National Institute of Health and Cambridge University. After visiting the NIH in Washington, where the most comprehensive analyses were performed, the world’s leading doctor and researcher in the field of MS told her, based on the obtained results, that her spinal cord had been thinned down and atrophied and that the damage was so extensive that she would never be able to walk again, while her condition was progressive. Currently, there is not a single therapy left for Simonida, nor there is a medical study that could help her. She could get the proposed therapy in Serbia, but the likeliness of the illness’ progression being slowed down is quite low.

However, doctors advised that she needed to learn to live in a wheelchair, hoping that the condition would not continue to progress at the same speed jeopardising the functioning of her arms, lungs, speech and brain. Simonida would like to try to do this, keeping her spiritual and physical condition as good as possible. She wants to continue painting, working at the faculty which has been supporting her and helping her all along, together with her students, and not to give up fighting against this cruel and unpredictable condition that cannot be treated or cured at the moment

How can you help?

Since Simonida is unable to walk independently, or to perform basic daily tasks (going to the toilet, bathing, getting out of the bed), her partner Magda was forced to resign from her job after 23 years of working in media, in order to be with her 24 hours a day and help her with everything.

Simonida needs financial support so as to be able to make adaptations to her living environment in the next year, so that she could be at least partially independent, move around the house in the wheelchair and go out. She also needs a lift chair to get her to the first floor, so she could continue doing the thing she loves and that is her calling, i.e. painting and working with students at the faculty.

Furthermore, since Magda is currently without a job, this financial support would enable her, as Simonida hopefully regains some of her independence, to become employed which is crucial, especially in the event of Simonida being unable to return to her job at the faculty.

Simonida needs to have:

Simonidina’s fight is a marathon, rather than a sprint race, just like her profession. Also, this fight is not only for her own sake, the fact that she is keenly aware of, but she rather hopes that she would be able to inspire other people to keep fighting, as well as help her MS comrades with whom she is frequently in touch.

Who is Simonida Rajčević?

Simonida was born in Belgrade, on 2 April 1974. She finished her BA studies in 1997 and master’s studies in 1999. She received her PhD degree in 2015, from the Faculty of Fine Arts in Belgrade where she currently works as a full professor.

She was a recipient of the DAAD scholarship for the first year of post-graduate studies in Berlin. She has been a member of the Association of Fine Artists of Serbia (ULUS) since 1998. Since 2000, she has worked at the Faculty of Fine Arts in Belgrade. From 2008 to 2010, she was assistant professor at the Faculty of Architecture in Belgrade.

She had more than 20 solo exhibitions and participated in many group exhibitions in Serbia and abroad.

During the 24 years of her teaching at the university level, she had hundreds of students. All of them are still with Simonida, just like she is with them. For 13 years now, Simonida has been living with her partner Magda Janjić who is now also her caregiver.

How can you help Simonida to continue with her life and work?

Your help enables Simonida to have access to the necessary aids, support and care. Payments can be made to any of the accounts below. Thank you for being with us in this battle.

Dinar Account

Account number:

340-0000032324009-64

Recepient:

Magda Popović, Belgrade

Payment purpose:

Help Simonida

EUR account

Account number:

340 0076519614 27

Recepient:

Magda Popović, Belgrade

Payment purpose:

Help Simonida

IBAN:

RS35340000007651961427

SWIFT CODE:

GIBARS22

Bank:

Erste Bank a.d. Novi Sad, Republika Srbija

Our Progress

In less than 48 hours, due to your generosity, we managed to achieve the initial goal of 20,000 EUR! You offered Simonida great hope and support. We invite all people to keep supporting Simonida if they can – you can make payments to the accounts provided above. Every contribution has the power to change someone’s life. Thank you for being with us in this battle!