We have celebrated Helena's birthday, later than it really was :) She was all dressed up, cute and Healthy. Though we'll never forget the day her birthday actually was and you singing the Happy Birthday Song just a few moments before the Pet CT start. Thank you from the bottom of our heart for curing her.

Now when I look back it is hard to write Helena's story. She was born on January 12th 2015, as a normal healthy child, marked 9/10. Who knew that on the same day, but a year later she will be in Berlin at PET CT. Her HI story began on April 11th 2015, when she was 3 months old, and she collapsed at home after an afternoon walk. I remember we rush to ER, she was unconscious but eye open, motionless. At the ER, after the examination, doctors considered she was just fine and send us to the clinic for thorough examination where they check blood count which was all right, and send us home. Unfortunately, they missed to check the blood glucose level. That incompetent and superficial examination jeopardize Helena's conditions even more.
Tomorrow morning we took her to her pediatrician, but she as well thought that everything was fine with Helena. My husband and I decided we should take her to do the EEG, and we did. It was her first EEG examination which shows normal brain activity.No one considered Helena should stay at hospital for detailed examination and check ups, and we couldn't convince them that something was wrong with her. Days passed and she start to shake every now and then, we took her to her pediatrician again, and she conclude it was moro reflex. We just couldn't convince doctors that her condition is not normal and we should be taken seriously.
Two months after the first episode of unconsciousness she had a really bad seizure, and my first thought was, Oh God now it's late. She was hospitalized finally, and blood glucose was measured, it was 1,2mmol/l. We were urgently transported to Belgrade, where we stayed for month and a half. First two weeks doctors couldn’t figure out what was wrong, they couldn’t establish a diagnosis. Because everything they examined was just fine, all reports was all right. Even her insulin level was ok as well. Except second EEG that we have done in Belgrade, which showed slow brain activity, and since she had confused look, and didn't react on sounds. Doctors told us she is blind and deaf. Those words broke my heart. But soon after she start to react, examinations showed she was ok in that matter as well. However, I lost lactation few days after, and since Helena was only breastfed she had never accepted a bottle, nor any other kind of solid food. It was almost impossible to fed her. Unfortunately, doctors have never told us for the possibility of a G tube. I can't tell how hard was to fed her. That was maybe the hardest thing for us to do. And food was the only thing that would help in order to turn off the infusion of glucose, which she take more than a month continuously, for her glucose to be on a normal level, especially since she didn't react on diazoxid the way she should.
Anyway, only after several measurements it was obvious that the insulin level was slightly above normal. The doctors consulted GOSH clinic expertise in London, who also was not sure whether it was Hyperinsulinism, and thay immediately referred us to do genetic analysis.Which we did, and send blood to Exeter UK.We have received the Report showing Helena has an ABCC8 mutation, inherited from one parent. We were advised to do the PET CT. And that was where we hit the wall. No one in Belgrade nor in Banjaluka considered urgent to direct us for further steps. Doctors didn’t have experience with Hyperinsulinism, they didn’t know where and how we can do the PET CT. At first we thought we will do it in London. But then, we find out for Hyperinsulinism Family Conference held in Barcelona. We packed our luggage and flew to Barcelona where we got all answers to our questions and all relevant information. And we met You prof Barthlen. You were our light at the end of a tunnel.
Afterwards, we have focused only on the Greifswald clinic. When we got our Insurance Authority Note that we have a green light and we can go, it was one of the happiest day for us as well as her birthday when she did Pet CT and got the confirmation that it was focal form and a surgery is possible. We did't have doubt in you even for a moment. We knew you will do the great surgery. And we were right. From now on, Helena will celebrate two birthday, one on 12th of January, and the other on 19th of January when you gave her the opportunity for a new birth and new healthy life.
She has recovered so fast after the surgery, and start to progress. We struggle with feeding until the day after the surgery, when she actually got her appetite, which was so new for us, and odd that she actually was hungry. We are so happy and thrilled with every new day with her, because there is something new every day. There is no word to describe our gratitude. Thank you Prof. Barthlen.
We are hoping to see you in Paris in September, when the CHI Conference is planned.

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