Before everything else, Sofia is Sofia
There are many medical words around her life: cerebral palsy, epilepsy, spasticity, gastrostomy, severe scoliosis, therapy, medication and surgery. They matter, but they come after something simpler — Sofia is a child.
She needs help with feeding, hygiene, positioning, medication and most daily tasks. Her life, however, is not made only of medical routines. It is also made of stories, kisses before sleep, time with her grandmother, music and hands held tightly.
What an ordinary day looks like
A typical day begins with food and medication, followed by hygiene, gastrostomy care and positioning. Meals and snacks are scheduled around treatment and therapy. Physiotherapy, braces and her spinal corset are part of the routine.
At night there are more medicines, feeding and the familiar bedtime moments with her mother. Care is nearly continuous, but the family works hard to leave room for play and closeness.
Not every day is the same
Some days Sofia is calm and smiling. On others she seems uncomfortable and cannot simply say where it hurts. Her mother has learned to read small changes in movement, crying, muscle tone, breathing and facial expression.
There are difficult nights, seizures and days when tiredness makes everything harder. There are also good days — including the simple joy of being held by her grandmother and hearing familiar voices.
When her body goes into a fight
Sofia’s seizures can make her body extremely tense and may affect her breathing. Her family follows the treatment plan given by her medical team and stays close through each episode.
She has also experienced serious respiratory complications, including aspiration-related illness. Those experiences are one reason safe feeding and careful monitoring are so important.
What she needs now
The most urgent long-term medical step is treatment for her severe neuromuscular scoliosis. Her spinal curve has progressed to about 90 degrees, affecting posture, comfort and the space available to her chest.
The family is preparing for the preoperative evaluations and complex spinal surgery in Switzerland while continuing the therapies, nutrition and daily care that keep Sofia as stable as possible.
What her mother wants most
The goal is not a perfect life. It is a life with less discomfort, safer positioning, more stability and the chance for Sofia to experience more calm days with the people she loves.