Braunschweig. The many donations from Braunschweig have enabled doctors to research the rare protein loss syndrome. Nuri’s mother reports.
–
–
A little guy with great strength: Nuri Vogt defies him serious illness with fearless enjoyment of life. “He can’t be brought down,” says his mother Susanne with a smile.
Nuri is six years old now. We reported on his two years ago fight to survive and a large-scale fundraising campaignwhich is to serve the research of his illness. The boy from Stöckheim only has half a heart and suffers from it Protein Loss Syndrome. “Research alone can save Nuri,” was our headline at the time. A Race against time.
Your newsletter for Braunschweig & the region
Order a free newsletter and read the latest from the region in your mailbox every day.
–
The disease continues to give doctors many mystery on. In the protein loss syndrome, the body’s own protein albumin is excreted from the bloodstream into the intestine and is lost. The result: a severe protein deficiency in the blood, which, as in people with extreme malnutrition, leads to edema throughout the body. Around four percent of the around 5000 people in Germanywith only one ventricle get this disease.
More than 100,000 euros in donations are collected
100.300 Euro had the Braunschweiger after publications in our newspaperand collected in social networks through numerous fundraising campaigns. One Huge sum. “This city seems like a big family to me. The people here have one tremendous positive energy. That gives us strength, ”father Stefan Vogt said at the time.
The money went to the Fontanherzen Association in Magdeburgwho with it the research is up and running brought. Susanne Vogt wants to thank the donors again and tell them how meaningfully their money is being used. “This disease is demanding interdisciplinary action by doctors. Everyone is a specialist in his or her profession, but we bring the doctors together in a network so that they can exchange ideas and gain new knowledge. “
This is what happened recently in Magdeburg. There came in September Luminaries in various fields together to exchange ideas and information: including cardiologists, toxicologists, Vascular abnormalities specialists. They had come from all over Germany. But one of them came from the United States, and Susanne Vogt has high hopes in him: Prof. Maxim Itkin from the University of Pennsylvania, Expert in pediatrics and diseases of the lymph. The Braunschweig woman was on him in the course of her Internet research encountered.
“Keyhole” surgery is used
Itkin have one gentle surgical method developed. To put it simply: it glues the holey lymph in the intestine in a minimally invasive manner, i.e. by means of “Keyhole” surgery. He has already done this with several children. “And then the protein level in the blood doubled in all of them,” says Susanne Vogt.
With her, the drama had taken its course during pregnancy. Susanne Vogt knew that she was expecting twins. But in the 19th week a routine examination, found that one of the two fetuses only has one ventricle. The shock was deep.
Since then, the mother has been desperately looking for information and knowledgeable doctors. At that time, Susanne Vogt was almost ten weeks in the Medical University in Hanover. On June 15, 2015 the Caesarean section. First Ben, then Nuri. It immediately came to her Intensive care unit. When the baby was finally allowed to go home, the parents were at the end of their tether.
While a normal, healthy heart has two pumpable heart chambers that are separated from each other by the cardiac septum, Nuri only had one, the left one. It usually pumps oxygen-rich blood into the artery, while the right ventricle pumps oxygen-poor, i.e. used, blood into the lungs. In a single-chamber heart, however, the body and pulmonary arteries are both supplied from the same, single heart chamber in which mixed blood is located.
At seven months the baby had to the first OP let yourself endure. More than ten hours. An agony. After that, Nuri was unrecognizable, he was so bloated. The baby was in a coma for ten days. When the boy finally woke up he was suffering from Withdrawal symptoms from morphine. Hell for the child – and his parents.
Doctor in the USA supports vigorously
One operation after the other followed. Mental torture for everyone involved. Then another devastating diagnosis: Protein Loss Syndrome. The story of suffering took its course …
According to our article two years ago, Nuri was stable for a while, but then his condition collapsed: in his face and legs water deposited itself again away. Bad for the organs, bad for growth. While Brother Ben grew bigger, Nuri didn’t grow. “I was getting more and more nervous,” says the mother. Then she came across the Doctor in the USA. She is now in close contact with him. He should have operated on Nuri in the States in October. But the disease did not allow it. Just a respite.
Nuri is a happy child, emphasizes the mother. He accepted all treatments without complaint. Just like her without complaint Nuri’s diet implements. The boy is only allowed to eat certain fats and never more than two grams per 100 grams. Chocolate is just as taboo as French fries. He has to do it three times a day Medication to take. “I try to relax inside to help him a relatively normal life and not to show my fearfulness. “
Research gives her hope. The funds from Braunschweig have already initiated a lot.
