Against all expectations, 2.5-year-old Hilla is still alive.

After 350 days in the hospital, an organ transplant, numerous surgeries, and constant battles with bureaucracy, the family has reached a point where both their strength and finances are at their limits. All support has either been cut off, denied, or reduced to a minimum, even though Hilla still requires demanding, round-the-clock care.

Hilla has a rare disease, ARPKD — polycystic kidney and liver disease — in its more severe genetic form.

The beginning of her life was extremely тяжелый. Hilla spent her first months in intensive care on a ventilator. Dialysis was attempted in many different ways. Because of a ruptured vein, a hemodialysis catheter placed in her neck ultimately had to be inserted directly into the left atrium of her heart. At only one month old, Hilla underwent two open-chest surgeries and had to be resuscitated.

Her parents were told multiple times that her chances of survival were very small. A gravestone and funeral were planned. Palliative care was recommended even before birth, but the parents refused to give up.

During dialysis, she suffered multiple episodes of peritonitis. Due to cysts caused by the disease and extreme abdominal pressure, both kidneys had to be removed when she was less than one month old. The catheter in her heart became blocked and caused Hilla to suffer a stroke at only three months of age. The long-awaited and deeply loved child spent her infancy in the hospital.

Dialysis was performed at home for about a year, and the life-sustaining machine had to be replaced 11 times due to malfunction. This period also included nearly daily severe vomiting, which made growth and maintaining fluid balance extremely difficult.

Eventually, Hilla received a kidney transplant. The surgery was successful and the new kidney started working immediately, but rejection reactions have had to be treated afterward. In the future, the kidney transplant will need to be replaced at least once. Her liver already has cysts and scarring, and a transplant will be needed later on.

Now Hilla has finally been freed from the feeding tube that accompanied her throughout her life. Learning to eat has been exhausting, and hydration must be managed with millimeter precision. Lifelong medication is demanding and must be given with exact timing — even during the night — and its side effects are a significant part of daily life.

Despite everything, Hilla is an energetic and joyful two-year-old ❤️

Alongside the illness, the family is fighting the system. Decisions take weeks. The special care allowance has been discontinued, and caregiver support is being reduced. Different authorities provide conflicting guidelines, and no one seems to oversee the whole situation. The family has fallen through the cracks.

Applications are filled out at night. Every treatment is documented. Financial stress takes time and energy away from their child. All non-essential expenses have been cut, and household belongings have been sold just to cover mandatory costs.

The family is facing this situation alone, without a support network

The fundraiser supports the family’s housing costs and essential living expenses so they can simply survive.

If the fundraiser exceeds its €10,000 goal, the remaining funds will be directed to families who are facing a child’s or young person’s serious illness or crisis situation.