Hello, my name is Ashton Lee from Malaysia. I was born on 28/6/2011 with a birth weight of 3.96kgs. Everything seems to be good at the beginning other than 2 hospital stays for low blood sugar readings at the hospital. 4 months after the low blood sugar episodes (hypoglycemia), the symptom acted up again. This time I was admitted to a government hospital where doctors are specialized in treating this illness.

Upon further diagnosis, by the doctors at the government hospital, I have been diagnosed with Congenital Hyperinsulinism. It is a strange and rare disease that the pancreas produces too much insulin. Later during further blood and genetic testing it is found that I may have a focal lesion in my pancreas. The treatment for this illness was to use Diazoxide, glucagon, and/or Octreotide. The first line of drugs did not improve my low blood sugar readings. Finally, I had to take 4 injections of Octreotide a day to maintain my blood sugar levels. Even with that, continuous feeding and additionally with corn starch had marginally managed to control my blood sugars. Months had past, and based on the observation found by the specialists, it is possible now to give 3 injections instead of 4 injections without any adjustments to the dosage. My daddy and mommy continued with the very difficult regiment of continuous feeding every 2 hours, blood sugar checks every 2 hours and 4 injections a day. When my parents asked the specialist how long will it take for me to recover or make me more manageable in terms of blood glucose readings? The specialist just said that it could take 4 to 5 years more as one of her patients just got his blood sugar manageable at the age of 5. My daddy continued to search ways to find a cure for my disease. Soon we approached CHOP in Philadelphia but it was too expensive, then my daddy looked for another alternative in France since he works for a French company. My daddy’s boss Mr Beros, helped us in locating Dr Jean Baptise Arnoux who is the head of CHI in Paris. Dr Jean then said that without insurance it will be very expensive to treat this disease. He gave some Doctors contacts in Europe and one of them was Dr Klaus Mohnike. My daddy immediately wrote to Dr Klaus Mohnike explaining my condition to him. Almost immediately we had a response from Dr Klaus and in his reply he introduced us to Prof. Dr Winfried Bathlen. Prof. Dr Barthen called my daddy not long after receiving his email. Prof. Dr Barthlen mentioned that based on all the reports and analysis, there is a cure for me and the medical costs was kept to a minimum. Immediately, my parents and I prepared to leave for Germany to find a cure for my disease.

Our first stop was Berlin where I had my Pet CT scan done on 6th NOV 2012. The following day was a train ride to Greifswald. We were welcomed by Prof Dr Barthlen and his professional medical team. As soon as my name was mentioned they were already expecting us. On the 9th of NOV my daddy and mommy had a meeting with Prof. Dr Barthlen to discuss how the surgery was to be done. The surgery was scheduled for 13th of NOV. It was the longest day of our lives. I cannot imagine how my parents felt while I was in the operating theater. After 8 hours of surgery it was finally over. Prof Dr Barthlen called my mommy and daddy to explain that he had removed the focal lesion between the body and the head of the pancreas which was shown on the PET CT scan.

 

 

I spent a week at the Intensive care unit in order to stabilize my blood sugar. My blood sugar remained at normal levels during the whole time after the operation.  Prof Dr Barthlen confirmed that I was cured from CHI. I am a healthy baby now. The only other obstacle is to learn how to eat and swallow since I am still eating through my nasal tube.  The only way to lose the nasal tube is to continue to eat on my own. As of now I still have the tube but I am confident it will not be long before I lose the tube. We have promised Prof Dr Barthlen that once the tube comes off he will be informed immediately.

My parents and I would like to thank the CHI team  Dr K.Mohnike from Magdeburg, Dr W.Mohnike  from Berlin and Prof Dr Winfried Barthlen of Greifswald.

We would like to express our heartiest gratitude to Prof Dr Winfried Barthen for being such a wonderful, caring person, doctor and surgeon. My parents would not have found a better surgeon to operate on me. We want to let him know that he has changed our lives forever and we are forever grateful for what he has done for me.  We would also like thank each and every one of the professional medical team in Greifswald for taking care of me. Big thanks to Dr. C Muller, Dr A.J Michel, Dr. Ina, Dr.Marie, Dr  Emine and other members of the team.

My parents and I would like to thank each and every one of our family members who had prayed and spent sleepless nights thinking of me. Many special thanks to my paternal and maternal grandparents, other family members and friends who had continued to pray for me during my surgery and recovery.

We now leave Greifswald Germany as a cured healthy baby and happy parents back home to Malaysia. We are at your disposal if you need any information on our road to Greifswald Germany to find a cure for our son Ashton.

 

Ashton´s Blog

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