A day built around care
Meals, medication, hygiene and gastrostomy care begin early. Feeding is followed by positioning and time in her supportive seating. Therapy, braces and her corset are fitted around the rest of the day, and the evening ends with more medication and feeding.
The schedule is demanding, but her family also protects moments for play, talking, music and being held.
Gastrostomy and nutrition
Safe nutrition is a central part of Sofia’s care. The gastrostomy provides food, fluids and medication directly to the stomach and has helped the family manage previous aspiration and vomiting problems more safely.
Weight is monitored closely. Small gains matter because Sofia is preparing for major spinal surgery.
Medication
Sofia follows a complex treatment plan prescribed by her medical teams. Her current routine has included anti-seizure medicines and other medications used for her specific needs. Exact treatment decisions belong to her clinicians and may change over time.
Physiotherapy
During physiotherapy, her limbs are mobilized and stretched, and the therapist works on trunk control, positioning and sitting. Sofia cannot perform these movements independently, so therapy helps maintain mobility and reduce avoidable stiffness.
The realistic goal is not a sudden cure. It is to protect comfort and function and prepare her body for what comes next.
Speech and communication support
Sofia does not speak, so communication work looks different. The people closest to her pay attention to eye contact, facial expression, sounds, smiles and changes in muscle tone. Every consistent response is meaningful.
Corset, orthoses and home care
Her spinal corset and orthoses remain part of positioning and support. At home, the family also performs massages and exercises, changes her position frequently, cares for the gastrostomy, watches her temperature and weight and remains alert for infection or discomfort.
The treatment is also human
Medicine and therapy matter, but so do the people who sit with Sofia, hold her, make her laugh and give her a life that contains more than procedures. Her smile is one of the clearest ways she tells them that those moments matter.
The next goal
The family is working to keep Sofia stable, help her gain weight and complete the next investigations in Switzerland. At the same time, fundraising continues for the spinal surgery and related care.