A Breath for Sebastian
Sebastian (affectionately known as Sebi) is the most amazing and resilient little boy from the tiny country of Slovakia who is the biggest warrior we know. After exhausting his options in his home country, he and his family made the long and challenging journey to seek medical treatment at the Boston Children's Hospital. Sebi fights like a lion for every next breath but he can't do it alone. He now needs a little bit of your help!
Mirka and Rado's second child, Sebi was born prematurely at 28 weeks and came to their lives as a Valentine's Day surprise – way sooner than he was supposed to. Immediately after being born, he was resuscitated and connected to mechanical ventilation seeing that his lungs were seriously underdeveloped. With huge uncertainty over his future, no one knew what to expect. However, since that moment Sebastian has been proving his strong will to live. He fought like a lion and recovered quickly enough to go home after only a few weeks, with a weight around 2 kg (4.5 lbs).
Everyone was overjoyed to have him home but he was most special to his big sister Eby who finally got to meet her little brother. Unfortunately, the joy was replaced by fear when Sebi stopped breathing for the first time. He was only three weeks old when he stopped breathing and his mom had to resuscitate him for the first time. He was admitted to the hospital and the never ending journey of tests and medical appointments has begun. The endless process took several months, with doctors trying to help Sebi with different treatments but nothing worked and the respiratory arrests became more and more frequent and terrifying. Sebi continues to unexpectedly stop breathing - sometimes it happens when he sleeps, sometimes during the day, but every time it is without warning.
The results of the tests revealed nothing too helpful: the polysomnography (a type of sleep study) showed that there was a central problem in his brain (central sleep apnea) but the respiratory arrests did not subside and, quite to the contrary, became even more frequent. It was necessary to secure Sebi's breathing so that he would not die in his sleep (during which most of the respiratory arrests were happening). As the only infant in Slovakia at that time, Sebi was initially fitted with a non-invasive mask ventilation but with accumulating health problems requiring more and more surgeries, he ended up with a tracheostomy (a tube inserted at the front of his neck) on artificial lung ventilation.
After Sebi learned again how to nurse, eat, and drink, new problems arrived in the form of frequent inflammations and prolonged stays at the hospital. Despite all these complications, Sebastian's parents remained hopeful that the worst was over and that he was stable and wasn't going to die of sudden respiratory arrest. However, things got only more complicated as – independently from the respiratory arrests – Sebi’s heart started to slow down or stop unexpectedly. He ended up on the operating table in the Children's Cardio Centre in Bratislava, Slovakia, where – after several resuscitations – he received a pacemaker. All those repeated resuscitations and hospital stays negatively affected his cognitive development and Sebi had to learn how to sit, crawl, walk, eat and drink all over again, relatively “insignificant” complication compared to the effort of simply keeping him alive.
The current reality of Sebi's life is that he can stop breathing anytime and anywhere (he faints, collapses, and stops breathing), at which point he urgently needs resuscitation or artificial lung ventilation. It gets even more tricky as he sometimes also has spasms (or convulsions) during which resuscitation is impossible (and the doctors don't know why) and the only thing his parents can do is helplessly wait until he wakes up.
After exhausting possibilities for treatment locally in Slovakia, Mirka and Rado found renewed hope for their son in Boston and are currently seeking treatment at the world-renowned Boston Children's Hospital. One of Sebi's main problems right now is tracheomalacia (collapsing of airways), which can cause respiratory arrest. Sebi's tracheomalacia might possibly be resolved by a single (but very complex and expensive) operation at Boston Children's Hospital but given his numerous health complications, doctors are cautious before proceeding with another invasive surgery. Sebi is currently undergoing further genetic testing and additional procedures in order to determine a definite diagnosis and the most optimal – and least invasive – course of action. 
Despite all the things that Sebi has been through in his short, less than five years of life, he is an amazing, happy and cheerful child, radiating hope and joy anywhere he goes. He enjoys every moment with his big sister Eby, and if not for the “plug” on his neck, you would never guess what he's been through. Sebi has an unquenchable thirst for life and instantly melts the heart of anyone lucky enough to meet him. He is such an inspiration to all!!!
Sebastian has already taught us all more than we will probably ever be able to teach him and more than all the teachers of our lives. He shows us every day to never give up and to erase the word “impossible” from our vocabulary; he teaches us to enjoy every moment of our lives to the fullest and that those ordinary, mostly invisible daily things are actually the most precious ones. If you get lucky enough to meet him in person, his courage and enjoyment of every moment of his life will blow you away!
Sebi's has already garnered the support of thousands of generous people from Slovakia, who contributed funds that allowed him to make the unlikely and complicated journey from Slovakia to Boston. Mirka and Rado keep overcoming unimaginable obstacles in order to give Sebi a chance to breathe freely again. The main goal right now is for Sebastian to undergo a surgical treatment of tracheomalacia at Boston Children's Hospital, if determined by the doctors to be the best course of action. However, staying in Boston while undergoing additional and unforeseen testing and treatment, combined with the accumulating medical bills means that Sebi and his family continues to need your help. Every donation, however small, will literally mean one more breath for Sebi.
THANK YOU!!!
Other ways to support Sebi and follow his story:
Venmo: @miroslava-janitorova
PayPal:
https://www.transparentneucty.sk/?fbclid=IwAR1Ou6qkSvNUP3lHNK_srK0DGOqD7SBKcndVC963I7Eqj0nPYyqDJqR_0QM#/ucet/SK8909000000005175830228
https://www.facebook.com/Sebastian-our-greatest-warrior-101121898548374 (in English)
https://www.facebook.com/nadychpresebastiana (in Slovak)
www.nadychpresebastiana.sk (in Slovak)
www.ludialudom.sk/vyzvy/9244 (in Slovak)
