Gökhan wearing his football Jersey with the Logo of FC Bayern Munich, the short red pants. “He sleeps,” says Betül, his mother, as if she had read him a bedtime story.

But Gökhan is already asleep for a very long time. For over a year. And so long Betül wakes up in his bed.

it was Then that Gökhan has remained in this in-between world, about which we know so little. Since then he has survived the most serious epileptic seizures, and hellish infections. Only he never woke up again.

Gökhan is now four, and his legs are thin as horsetails. A feeding tube caramel flows-coloured food through the abdominal wall into his stomach.

would you like To help the family Kirac, you can do that through the Foundation star. She directs your donation to the Association of silberstreifen e. V., will assist with the money the Kiracs. Foundation star: IBAN DE90 2007 0000 0469 9500 01 , BIC DEUTDEHH – keyword “Gokhan”

Not just once, and the Doctors said to Betül and her husband Göksel: say Goodbye to your child, it will die in the next few hours. Not only once you were asked: “do you Want to live in any case, end of life, prolonging measures?” And you answered: “Yes. We will not abandon our child.”

“No one can take me hope. I always had and still have them,” says Betül. “We feel that Gökhan fights. This is why we fight. We hope that he wakes up at some point out of the coma, returns to us,” says Göksel.

“out Of Nothing”

Gökhans disease is not identified rare, and only for such a short period of time in the genome that it has a proper name, but is named after the Gene and the location on him that is affected by the Mutation: DNM1Lc.1207C>t. in the World, we know of five children who have this specific genetic defect. In Germany, only from Gökhan. All are suffering out of Nothing. There is no suitable drug, no therapy. And anyone who dares to make a prognosis for these children.

As your life, the drama took the tables turn, was Betül 30 years old, Göksel 33, Gökhan three and a half and his sister Senay eight. The disaster, the family met in a Moment, when she was particularly happy.

Antalya, 4. August 2017. The four fly to Turkey. You want to make a two-week vacation in a resort and then to Kayseri, where Betüls parents live and from where Göksels parents came over 40 years ago, as guest-workers in Bavaria. The Kiracs like your living in Munich, you are not satisfied with what you have. Göksel has a secure Job, he managed the warehouse in the research Department of a large company, Betül works part-time in a bakery. Your Proud of the two children. Senay, delicate and graceful, Gökhan, a small daredevil.

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Gökhan in Turkey-holiday, a few hours before the child of one second to the next began to cramp.

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It is the second day in Turkey, Gökhan builds eager sand castles on the beach, he is as always, cheerful and loud. In the evening, Betül makes your children cute, Gökhan wearing white Bermuda shorts, Senay must before eating, nor is it a Henna Tattoo on the Hand paint. Your brother sits down next to you. As he was planning to get up later, no longer to carry him down the legs. He is tired, thinks Betül. She carries him into the room, lays him on the bed.

“Papa, save me.”

“Does anything hurt?” Gökhan shows on his belly and legs. Seconds later, his body tense begins to twitch uncontrollably. His face is distorted, he twisted the eyes, and barely gets air. Betül pulls him up, runs in a panic to her husband. Gökhan whispers between the two seizures, “daddy, save me.” The father is crying.

Gökhans face is turning blue, an ambulance brings him to the nearest clinic. After what felt like an eternity, a doctor to the parents, he says, “to breathe, her son, has stopped. We had to intubate, he is now being ventilated artificially.” Gökhan gets infusions, the drugs, the Doctors hope will stop the epileptic seizures. However, you do not stop. Still of the night, Gökhan will be transferred to the University hospital. Betül does not believe to be a viral infection, Göksel know what to think. He’s just still scared.

The parents are not allowed to Gökhan in the night. You sleep with your daughter on one of the wooden benches in the courtyard of the clinic. In the Morning, the doctor explains to them that Gökhan still cramping, he was in a “Status epilepticus”. They had moved Gökhan therefore, in a state of artificial coma. “Your son is suffering from life-threatening. We can lose him any second.”

In the ICU Gökhan, only with a diaper, dressed, on a pink pillow. Anywhere surveillance monitors, cables, hoses. The parents are not allowed to touch him, and after ten minutes, you will be sent away again.

“If he dies, you get a message.”

But the parents did not go away, you stay in the hospital. You have to wait. You cry. Why Gökhan?

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Gökhan and his sister Senay

©Florian Jaenicke/star

Antalya day four. Gökhan has survived the night, the epileptic seizures could be interrupted. The Doctors ask the parents to pre-existing conditions that could indicate a specific Problem. “It was nothing”, they say. Only in his language development Gökhan afterwards was something he rarely speak in full sentences.

you may Gökhan, but he is unattainable. His body is strangely swollen, and his head looks monstrous. Betül breaks out in tears. It is made of a nuclear spin tomography. “Cerebral edema,” say the Doctors.

The two sit in the courtyard of the clinic, as the doctor calls in the evening. “I have some bad news, your son will not survive the night.” Only a few minutes Betül and Göksel may say goodbye to your child. You kiss Gökhan and pleading: “don’t Leave us alone.”

minimal reflexes

Göksel: “I told our Relatives, it is coming to an end. Then I passed out. I blamed me: Why are we flown at all in the holidays?” The next few hours of wait you in front of the intensive care unit. Again and again they ask: “What about our child?” – “If he dies, you get a message.”

Antalya day five. In the morning, the doctor calls, he says, Gökhan pointing back reflexes, the minimum, the Edema had decreased. But he also says: “Here we can do medically, nothing more. If you have the ability to move him to Germany.”

related hang on the phone. The insurance company wants to die costs for the return transport do not apply. A gap of two weeks between the old and the new abroad, travel insurance will cost the Kiracs at the end of almost 30,000 euros. Friends and Acquaintances to collect money, the father gets a loan from his company.

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Gökhan can now breathe on her own – here he inhaled. It is the parents who have put on the mask, so as you hose him on a Diet his liquid food to be administered. You have always taken on more tasks in the clinic and to trust now, to maintain Gökhan at home.

©Florian Jaenicke/star

Gökhan is in the night from 9. on the 10. August flew to Munich with his parents. To Senay, the grandparents, who came to Antalya to take care of. The machine of the private ambulance transport company that is set up like an ICU, a doctor and a paramedic attend to Gökhan who is still intubated and in an artificial coma. In the early hours of the morning, he comes in to the children’s hospital in Schwabing.

Munich, 10. August. Again, surveillance monitors, hoses, cables, catheters, and in the middle of your critically ill child. The Doctors of the paediatric intensive care unit to see four possible causes for Gökhans condition: a metabolic disease, an infection, a disorder of the immune system or a genetic defect. Take it from him and his parents blood.

No therapy

genetic analysis need time. Only six weeks later, the result is: Gökhan actually suffers a genetic defect. Was not inherited from the parents, the Mutation spontaneously occurred. The Doctors try to explain to the parents what is happening in his body. You talk of mitochondria, of a collapse of the energy supply to the cells of the body, from one nerve cell injury, which had a prolonged epileptic seizure. And they also say that Gökhans brain have taken heavy damage.

“The first few months I just cried. I did not want to believe what the Doctors say. I was hoping for a miracle,” says Betül. “We worked as remote controlled. Our body were not there, but our souls. In between, I was afraid that my wife takes life. Also, I came to my limits,” says Göksel.

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Göksel Kirac has built a Treadwheel for his son, so that the joints are not stiff. Senay, Gökhans sister, with help, to move his legs.

©Florian Jaenicke/star

There is no possibility of a therapy, the Doctors can only treat the symptoms, the seizures. Göksel speaks again and again with the Doctors, Betül sitting at Gökhans bed, caressing his hands, his cheeks. You must endure to learn that from him nothing comes back.

In her apartment Betül and Göksel, do not return to the first few weeks, a single Time, you will stay on the hospital grounds. Relatives bring clothes to Senay, the grandmother and a cousin. “I thought I was cheating on my son, if I need a ride home,” says Göksel. “He could die at any Moment. I would have never forgiven me, if I would have been with him.”

Munich, at the end of August 2017. Still, any attempt to get nick out of the coma failed. Each Time the Doctors to the anesthesia drugs, seizing it again, stronger. At the end of September, you say again: “It looks bad, we could lose him.”

the most Important Moment for a Long time

Göksel: “I had the fear that the Doctors give up on such a rare, unknown disease faster.” But the Doctors Gökhan don’t give up.

Munich, October 2017. It is possible to wean Gökhan of the anesthetic agents, him on medication to stop the seizures keep somewhat under control. Göksel: “We thought, now we finally get our son back.” But the more awake he is.

Vogtareuth, at the end of October 2017. Gökhans condition is so stable that it can be moved to a Nice clinic in the Chiemgau. The local neuropaediatrics and Neurological Rehabilitation, specializing in children in coma and vegetative state. The parents expect much from the stay. But after eight days, Gökhan must be re-moved to Schwabing. Inflammation of the lungs.

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“is It Gökhans disease to a spontaneously occurring genetic mutation. This means that the genetic defect has not been of the parents to be inherited, but during the embryonic development of newly created. He relates to the genetic material of the mitochondria. Mitochondria organelles in each individual cell, the vital energy for metabolic processes. This force function works the cells correctly, it is either to early and severe development disorders or disease States, associated with an increased energy demand, a collapse of the energy supply – as in the case of Gökhan. The consequences are mass malfunction of the body cells and the mass death of cells of the nervous system. The epilepsy may not be the Start, but an expression of brain damage.”

©Florian Jaenicke/star

Munich, November 2017. Unexpectedly, Gökhan opens her eyes, only half-and only very briefly. But for his parents it is the most important Moment for a Long time. Even if the look of your child goes into the Void. Betül: “It happened in the second I take him for the first Time from the sick bed and in their arms, was allowed. It was an indescribable feeling.” Göksel: “Our batteries have been recharged. We thought, maybe he gets something, hear us, feel us.”

Vogtareuth, Winter 2017. Gökhan is back in rehab. And Betül learns quickly, takes over a task after the other. Up to 30 Times a day she sucks Secretions from Gökhans nose and mouth, if the monitoring device for the oxygen saturation Alarm. You picked up bottles of vitamins, nutrients, Glucose, protein, and fat to the diet of the hose to embed Gökhan every two hours, day and night, and with him his stuffed animals, the penguin and the cow. She sleeps with him in the room. Never in the place or to the supermarket, she never goes for a walk. You want to be with Gökhan, always.

thoughts of suicide

Vogtareuth, at the beginning of March 2018. Ironically, as an infection for the next crisis, is not Betül him. She is in the hospital with a rheumatic disease. 34 seizures in Gökhan, the father listed on a day in his note-book. He feels helpless without his wife, has thoughts of suicide. The Doctors put him in a monitored space, not far from his son.

Göksel: “When I was there, called my daughter, said: dad, are you coming home soon? I need you! Since it has click-gemacht with me. I don’t know what I would have done if Senay wouldn’t have called.”

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Gökhan is from Antalya to Munich

©hfr

Gökhan flown has a high fever, his body is swollen. Ask the Doctors for an emergency: “do you Want to live in any case-prolonging measures?” – “He suffers?” – “We don’t think.” – “Then we want the critical care everything is done. We do not give up on him.” Gökhan is brought back to Schwabing, in the children’s hospital.

In these days will not be asked Göksel sometimes, whether it would be better for Gökhan, if he was going to die. He never answers. Because the people have no right, he thinks, to ask him that.

Munich, 18. March 2018. Gökhan is on this day, four years old. Still, he is located in Schwabing, is still bad. He’s still getting a birthday cake from his parents, with a painted tractor. And about his bed-air balloons.

“Never give up”

there Will be a fifth birthday? A tenth? Göksel forbids such thoughts. Instead, he prints T-Shirts with the inscription “never give up” and sets up a Facebook page, “#team, bro”. He and friends ask: “Who knows someone who can help him?”

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The orphaned bed of Gökhan at home in Munich

©Florian Jaenicke/star

Göksel is aimed at neurologists and a geneticist in Europe, Israel, Russia and the United States. He sent hundreds of E-Mails. “The German Doctors say there is nothing more what you could try,” he writes. His hope: that somewhere in the world a doctor sits, the Gökhans fate to his cause makes something Groundbreaking research. However, with each negative reply, more despair. That in research nothing goes quickly, it takes time, money, and approval processes for new drugs, he does not want to have a long come true. Also not that rare diseases are not researched by Gökhan, rather, too few cases for large-scale studies to small markets for pharmaceutical companies.

Vogtareuth, at the beginning of may 2018. Gökhan is back in the hospital, he is breathing independently again. The parents are 24 hours with him, Betül from Sunday evening to Friday afternoon, then Göksel replaces you and Betül going to Senay to Munich. But the Situation is becoming more and more difficult. Göksel: “We have no more family life. We play only family. But we do this for Gökhan. We have decided He should never be alone.”

Senay is now nine and still silent. Shadow children are called the siblings of sick children. Sometimes, Senay asks her mother: “I Must be sick, too, so you can take care of me?”

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“Currently there is no prospect of ground-breaking research results is, unfortunately, to this special Mutation, which could help Gökhan. Currently these cases are only collected and described. The first case report dates back from 2016, there are four patients with the identical Mutation are out of Gökhan previously only known to a reliable forecast is not possible. If he doesn’t get any serious infections any more, or in the context of a severe convulsive seizure, dies, it may well be that Gökhan lives a few more years with this disease. It is not ruled out that he reached a slightly higher level of Alertness, but it would be from a medical point of view, a miracle, if he could communicate properly. His brain has now taken too much damage.”

Privatdozent Dr. Hendrik Younger, Vice-Chairman. Senior physician in the pediatric clinic Schwabing

©Florian Jaenicke/star

Vogtareuth, at the beginning of September 2018. Daily speech and language therapists working, Ergo – and physiotherapists with Gökhan. On good days, the four-year-old now has the eyes for a few hours. Not quite, but so far, that one sees: they are green-blue. And sometimes he gasps quietly. “I think he’s trying to tell us something, maybe. And even if his view goes into the Blank: For me, this is a Signal that his condition could still improve more,” says Betül.

How to proceed from here?

Göksel: “The Doctors have said that He will not survive. But Gökhan is still there. You said: He will never open his eyes again. But he has opened the door. He will never again cough. He coughs. He will never swallow again. He swallows. I say fight: Gokhan. I am very proud of my son.”

Vogtareuth, in mid-September. The clinic invites the parents to the “year of conversation”. In addition to Professor Steffen Berweck top doctor Hendrik Disciples from the children’s hospital in Schwabing, and a representative of the seats for children palliative centre Großhadern at the table. The question is: How should it go further? Gökhan is not a case for the palliative care centre, is the opinion of the Doctors. The parents are relieved.

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Since the drugs are reduced, Gökhan. the eyes more and more open

©Florian Jaenicke/star

The palliative care physician provides, however, that a Team from the center – a pediatrician, a child could ill support the sister and the social services – the family on an outpatient basis, if it wants to maintain Gökhan home The Doctors ask: “do you Dare? You have the power?” “Yes,” say the parents. “If we have found a larger apartment.” Because in their current – a 2.5-room, 62 square meters, second floor, no Elevator – had an intensive care bed, monitoring devices, and at least a table and a chair for the nursing service no place.

Göksel looking long for a new home for his family on several social funded Three – and four-room apartments, he has applied for, but none of the single visit he had been previously invited. Despite the classification of urgency level 1 to the housing office. Too many applicants for too few apartments.

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The family on the grounds of the clinic in Vogtareuth. Without a monitoring device in the Luggage, no walk is possible.

©Florian Jaenicke/star

Betül says: “I want to come home. I miss my daughter. She needs me, too.” But without a larger apartment, the family can not live together again. Munich, 17. September 2018. Göksel Kirac calls in the newsroom. He is excited. The Phenobarbital, one of the strongest medicines, especially sleepy, is to be reduced. Slowly, in tiny steps. The Doctors want to try this in spite of the still existing Status epilepticus after a year of coma. “Finally,” says the father. “I’ve wanted this forever, but now I’m scared too. Because now it will show whether Gökhan is awake or at least awake.”

Between coma and persistent vegetative state

in mid-November 2018. Gökhan had in fact become a little more alert, find the Parents. Sometimes you could think, he reacts to their voices, move the eyes in their direction. However, the Doctors rate these phenomena are very cautious. They now speak of a state between coma and vegetative state, in which Gökhan but also might stay, if the drugs can be further reduced. And they point to the fact that the brain damage since the outbreak of the disease more aggravated.

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can’t the Kiracs really be together again your choice. But for that you need an affordable larger apartment.

©Florian Jaenicke/star

For the past 16 months, Göksel and Betül Kirac have been living with this uncertainty. Göksel says: “We need to have patience. Our greatest wish is, of course, that Gökhan can communicate with us. No matter how. Maybe only with the eyes. Maybe he can lift but also the Hand. Or even much more. But even if this should not happen: We will always accept the way he is. Live with him as he is. The main thing, he is with us. Gökhan needs us. And we need him.”

would you like To help the family Kirac, you can do that through the Foundation star. She directs your donation to the Association of silberstreifen e. V., will assist with the money the Kiracs. Foundation star: IBAN DE90 2007 0000 0469 9500 01 , BIC DEUTDEHH – keyword “Gokhan”

The story of Gökhan and his family appeared on the 19. December 2018 in the star. Shortly thereafter, the four-year-old got a severe infection and had to be moved to the pediatric ICU of the hospital of Traunstein. There he was intubated temporarily. In the meantime, he is breathing again on his own and is on the normal children’s ward in Traunstein. The family has been seeking urgently an affordable three – to three and a half room apartment in Munich, with a lift or on the ground floor. Your current apartment is on the second floor in a house without Elevator, and is actually too small to supply to a child in coma round-the-clock with the help of a care service.

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