When Amálka was born, her parents already feared that their long-awaited baby girl might face a difficult road ahead.
Just one week before her birth, doctors were unable to clearly see the baby’s head during an examination. After Amálka arrived, their fears were confirmed: she had been born with Crouzon syndrome in its most severe form, a rare condition affecting the development of the skull and face.
From her very first days, Amálka began a journey that would involve countless hospital visits, demanding surgeries and long periods of recovery.
She has already undergone several major procedures, experienced artificial sleep and been placed under anesthesia numerous times. Today, she lives with a tracheostomy and a PEG feeding tube, while also facing developmental delays.
For her parents, caring for Amálka has become a full-time commitment. Every day brings new challenges, but they remain determined to give their little girl as much of a normal childhood as possible.
“We do everything we can to make sure Amálka can be with us as much as possible and experience the joy of being a child,” her family says.
And she is not alone.
Amálka is the youngest of three daughters in the family. Her partner has a daughter from a previous relationship, but to the couple, all three girls are equally their children.
They want nothing more than to take their daughters on family trips, create happy memories and allow Amálka to experience life beyond hospital rooms.
But even something as simple as getting into the car has become a daily challenge.
Because of Amálka’s medical needs, her mother must sit in the back with her. The older children then have to use emergency seats in the trunk, while the family carries Amálka’s stroller, medical supplies and other essential equipment wherever they go.
That is why the family is now asking for help raising money toward a larger vehicle — one that would allow all of them to travel together safely and comfortably.
Amálka will need her stroller and specialist equipment for many years to come, making additional space more than a convenience. For this family, it would mean greater freedom, safer journeys and the chance to make memories together without worrying about how everything will fit.
After everything Amálka has already overcome, her parents are determined not to let practical challenges stand in the way of her childhood.
“She has already fought so hard since the day she was born,” her family says. “All we want is to give her the chance to experience as much happiness and as many ordinary family moments as possible.”
