2017, אפר׳ 9, 16:40

Hello, 

My name is Victoria, i live in Israel and was born on 35th week of my mom's pregnancy on September 6th 2016, my weight was 3350 gr.

I was hospitalized for a while. And when my parents came to visit me my sugar level was very low, and doctors said that it's because of my mom's diabetes during the pregnancy. They also said that within a week i will go home. I was receiving glucose all the time, but sugar level didn't change during the week.  After that i started to receive hormonal treatment and diazoxide, which made hair grow all over my body.

Because none of the doctors didn't understand what's going on, my mom began to decant milk. After some period of time it became clear that diazoxide doesn't help and instead of it i started to receive octreotide (sandostatin). Sugar level bacame more stable and we were sent to genetic test, which was ready after 4 months. 

2.5 months since i was transferred  to pediatric unit in a hospital because i was already too big for neonatal intensive care unit. I've spent another month in pediatric unit and got insulin pump, its needle was suppose to be changed every 3 days.

Then i had a visit to genetic professor and my parents were told that there is 99% chance that i have a rare genetic disorder "Hyperinsulinism" which will make me receive 3 injections a day for the rest of my life. 

But even after receiving this horrible news my parents didn't give up. They approached a famous rabbi Fisher, who knew what doctors can help us. He recommended us to contact professor Barthlen in Greifswald. Later on, my parents found out that there is another family in Israel, that already got the surgery at professor Barthlen's for their son in 2016. The boy Ethan recovered well and now he is absolutely healthy.  So it was a place for hope in our family!!!

My parents have sent a letter to Prof. Barthlen, and were told to begin with PET CT to find out if i have a focal or diffuse type of disease. After PET CT test we found out that i have a diffuse type and surgery is impossible. And we approached Pfor. Barthlen again, he told us to send him PET CT results and generic test (which was also showing diffuse type of disease, because both of my parents have the same type of gene mutation ABCC8 ). 

Prof. Barthlen told us right away that he can't promise anything, but he will do everything possible so i wouldn't have to live on medications for the rest of my life.

It was 50/50 percent chance, the worst case scenario it would remain the same. 

Apparently,  i got very lucky, the test of laparoscopy showed that not all of the pancreas is damaged in the same way, i got something that called "leopard print" with concentration of damaged cells in the tale of pancreas. This part, which is 33% of pancreas was removed through belly button. If too much of the surface would be removed it would lead to diabetes, that we didn't want to happen, so professor removed the most damaged parts. 

After the surgery i felt great, but the most exciting was that i didn't need  octreotide pump anymore!!!! Of course, my parents have to check my sugar level regularly, because i still got left with unhealthy cells in pancreas, but at the same time there are plenty of healthy ones that, like Prof. Barthel said, can take over and i can get totally healthy with the time.

Currently, my sugar level is good. I am being fed every 3-4 hours, my meals have lots of carbohydrates.

We are so grateful to all of the doctors, nurses and medical stuff for their hospitality and help.

Huge thank you to Professor Barthlen. You are the best!!!! 

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