Support Sanjin’s Battle with a Rare Breathing Disorder

Sanjin’s mom, Mirsada, and I have been childhood friends for over 50 years. Now, all of our lifelong friends are coming together to raise funds for Sanjin’s treatment. Mirsada and Sanjin live in Sarajevo, Bosnia and Herzegovina. We hope to reach out to all good-hearted people to

join us in helping Sanjin win this battle and give him the chance he deserves for a healthier future.

___

Mirsada, Sanjinova mama, i ja smo prijateljice još od djetinjstva, već više od 50 godina. Sada se svi naši dugogodišnji prijatelji okupljaju kako bi prikupili sredstva za Sanjinovo liječenje. Mirsada i Sanjin žive u Sarajevu, Bosna i Hercegovina. Nadamo se da ćemo doprijeti do svih dobrih ljudi i pozvati ih da nam se pridruže u pomaganju Sanjinu da pobijedi ovu bitku i pruže mu šansu za zdraviju budućnost.

Here is message from Sanjin:

Central Hypoventilation Syndrome (CHS) is a rare genetic disorder that impairs my body’s ability to send the proper signals for breathing. As a result, not only do I fail to breathe properly, but I often stop breathing altogether, as my brain does not send the necessary signals. This disorder leads to a constant buildup of CO₂ in the body, causing continuous poisoning, as I am unable to ventilate myself like healthy individuals. Reduced oxygen saturation and low heart rate represent an additional risk for my organs. Due to the severity of the condition, surgery is required – the implantation of a diaphragm stimulator.

This condition is constant, with decreased oxygen saturation and heart rate, causing significant strain on my organs. People with CHS cannot efficiently expel CO₂ during physical or mental exertion, nor during everyday activities. During my disease phases, even the slightest effort leads to changes in the body and increased strain on the organs, which causes further gas retention in the body. To ventilate myself, I use a respirator at night and sometimes other devices that assist with breathing. These methods allow for at least minimal control of breathing, but I am not able to ventilate myself the way healthy individuals can. The condition requires ongoing medical attention due to potential long-term complications. CHS is extremely rare and has been diagnosed in only a few dozen people worldwide, through extensive genetic research and medical tests.

Currently, I am at the Slovenian Golnik Clinic, where I have been undergoing tests and diagnosis since 2022. Previously, I faced cardiac arrest, respiratory failure (2x), and six hospitalizations in the intensive care unit. I am in need of a new device, a home respirator, that can support my ventilation. I am currently under medical supervision due to the inability to acquire the very expensive device (€6,500), as well as increasing hospital costs (€4,000).

The costs include genetic testing, care, ventilation support, as well as specialized tests and attempts to manage the condition and prepare for surgery.

Poruka od Sanjina:

Centralni hipoventilacijski sindrom (CHS) je rijedak genetski poremećaj koji ometa sposobnost mog organizma da šalje odgovarajuće signale za disanje. Zbog toga ne samo da ne dišem pravilno, već često prestajem disati, jer moj mozak ne šalje odgovarajuće signale. Ovaj poremećaj dovodi do stalnog zadržavanja CO₂ u organizmu, što uzrokuje konstantno trovanje tijela, jer nisam u mogućnosti da se izventiliram kao zdravi ljudi. Smanjena saturacija kisika i niska frekvencija pulsa predstavljaju dodatni rizik za moje organe. Zbog težine stanja, potrebna je operacija – ugradnja dijafragmalnog stimulatora.

Ovo stanje traje konstantno, uz smanjenje saturacije kisika i smanjenje pulsa, što uzrokuje ozbiljan napor za organe. Osobe sa CHS nisu u stanju efikasno izbacivati CO₂ tokom fizičkog ili mentalnog napora, kao ni tokom svakodnevnog rada. U mojim fazama bolesti, čak i najmanji napor dovodi do promjena u tijelu i povećanog napora za organe, što uzrokuje daljnje zadržavanje plinova u organizmu. Da bih se ventilirao, koristim respirator tokom noći, a ponekad i druge aparate koji mi pomažu u disanju. Ove metode omogućuju barem minimalnu kontrolu disanja, ali nisam u mogućnosti da se ventiliram na način na koji to mogu zdravi ljudi. Stanje zahtijeva stalnu medicinsku pažnju zbog mogućih dugoročnih komplikacija. . CHS je izuzetno rijedak i dijagnosticiran je tek kod nekoliko desetina ljudi širom svijeta, uz opsežna genetska istraživanja i medicinske pretrage.

Trenutno se nalazim na Slovenskoj klinici Golnik , gdje sam nakon pretraga i ustanove dijagnoze koja se “vuce” od 2022 godine. Predhodno sam se suocio sa cardiac arrestom , respiratorna insuficijencija(2x) kao i 6 bolnickih hospitalizacija na odjelu intenzivne njege .U potrebi sam za novim apartom tj kucnim respiratorom koji moze podrzati moju ventilaciju . Trenutno sam pod nadzorom ljekara zbog nemogucnosti nabave veoma skupog uređaja ( 6,500 e) kao i troskovima bolnice koji rastu iz dana u dan ( cca 4000 e).

Troskovi obuhvataju geneticka ispitivanja , njegu, ventilacionu potporu kao i specijalizovane testove i pokiusaj saniranja stanja I eventualne preipreme za operaciju .