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.
Matteo’s Story coming soon
Care Beyond Cure – Ondine’s Syndrome
“One of the things I remember when we first met Matteo was the phrase ‘we are giving you a baby who is alive’ that phrase meant everything and nothing, it meant that Matteo could die at anytime. Children born with Ondines syndrome do not have the cerebral impulse to breath.” Antonella Zamboni, Matteo’s Adoped Mother.
A Little Magic Unit – Guest Blog in Russian
Guest Blog from the Russian Children’s Palliative Care Foundation
Дела у маленькой Насти развиваются медленно, но она делает удивительные успехи. Всего лишь полгода назад врачи говорили, что она не сможет сама есть твердую пищу, а сегодня она с удовольствием уминает ножку вареной курицы. Вся ее семья, ее прекрасная мама заботятся о ней каждую минуту. Большую поддержку оказывает им Мобильная служба паллиативной помощи детям Благотворительного фонда «Детский паллиатив»
A Little Magic Unit
A Little Magic Unit – A guest blog from the Russian Children’s Palliative Care Foundation
Things are going slow with little Anastassia but she is making incredible progress – she can eat and swallow solids today though less than a year ago it was predicted impossible. Her family, her beautiful mother are with her every minute, as the Mobile Palliative Care unit of the Russian Children’s Palliative Care Foundation is there to provide support 7 days a week.