Anastassia’s Story – Hope and Hyperinsulinism
Hope and Hyperinsulinism in infants
“Don’t be afraid that things like this happen, I believe that every obstacle that is given to you in life is there so you can overcome it and become stronger.” Lana Krupenrova, Anastassia’s Mother.
“Everything was going well, the pregnancy was going well. The only thing they said was that the baby was quite large. I delivered her prematurely, I think about a month early. She was born very big, a large 4.380 kg”.
“Unfortunately, we didn’t find out about her condition immediately, only after 14 days the diagnosis was clear, when she was taken to the hospital. Before that it was really scary, you know, when you don’t know what’s wrong with your baby and nobody can explain anything, it’s horrible.” Lana Krupenrova.
“Her diagnosis was Hyperinsulinism” Dr Ella Kumirova, Anastassia’s Palliative Care Doctor. “She was also examined in Germany where this diagnosis was confirmed.”
“When they finally told us what was wrong, there appeared a certain clarity, certain goals- we need to do that, that and that. “ Lana Krupenrova. “Then we went for a couple of surgeries, because the illness is connected to the pancreatic gland and low blood sugar because the gland produces too much insulin and the blood sugar must be constantly increased because if the level falls, hyperglycemia can happen. “
Dr Kumirova explains that Anastassia lives without a pancreas and she constantly needs medical correction for her condition. This means round the clock care. Anastassia’s parents are very hands on and understand the condition. They are able to care for her at home with support from the palliatve care team as they need it.
“The role of palliatve care specialists should be geared towards helping people cope with the situation, So that the family achieves a comfortable state, so that they feel they are not alone.” Dr Kumirova.
“Palliative care is a completely different area and has completely different aims, We do not aim to cure fully, we may have a very small medical component, in curative sense and very high social, psychological component, spiritual one, In other words we try to and achieve to improve quality of life of kids.” Marina Pridatchenko, Head of the Mobile palliative Care Team.
Please consider supporting the important work o the Russian Children’s Palliative Care Foundation www.rcpcf.ru
– Lana Krupenrova, Anastassia’s Mother
– Dr Ella Kumirova, Anastassia’s Palliative Care Doctor
– Marina Pridatchenko, Head of the Mobile palliative Care Team.
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