Fatima's Story

This was a major adjustment for our lives. We were expecting a normal baby, but instead we were faced with a baby with a difficult illness with enormous constraints associated with parenteral nutrition.

At first, I was very scared because it was a huge responsibility for me. However, after a week, I learned everything completely - from changing infusions to dressing.

Fatima is now two and a half years old and is not allowed to eat anything. Infusions have to be changed twice a day.

A serious complication

We had many difficult moments with her, but the most difficult was in December 2023 when Fatima almost died of sodium deficiency. She spent a week in a coma in the intensive care unit, but thankfully pulled through.

His illness requires constant vigilance to ensure that his electrolyte levels are balanced.

We do our best for Fatima. She has a central catheter through which she is fed.

It was the worst thing we ever experienced with Fatima. Even the doctors said she wouldn't survive. She had three epileptic seizures that day due to sodium deficiency.

The day before, she played as usual. However, because she vomited during the night, she lost sodium, which is why she looked like this the next day.

She really needs a lot of hospital care, whether it's for a slight fever or a little cold; she always needs hospitalization because of this condition. We're almost always in hospital for about two weeks every month. She often has liver problems and also pancreatitis due to the nature of her diet.