You’ve asked what surgery Sofi needs.
Doctors found that if a certain part of her brain is removed, she could live without seizures and develop much faster — walking, talking, learning like other kids.
The cost starts from $120,000. A sum far beyond what our family can afford — but it’s the only real chance for Sofi’s future.
You asked how much Sofi’s care costs each month. For our family it’s a huge amount:
– Physical therapy (5x a week)
– Ergotherapy
– Massage & speech massage
– Medicines
– Doctor visits & monthly check-ups
– Extra costs: custom shoes, medical devices, expensive tests
And we try to save for surgery on top of that.
In total: $1600+ every month just for Sofi, not counting normal family expenses.
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Sofi has been seizure-free for 6 months. But stopping treatment isn’t an option — seizures can return anytime, and without rehab every bit of progress could be lost.
Every day we spend huge time and money just to keep her progress — and to help her move forward, even if slowly.
When Sofi was born, it was terrifying to look at her. She couldn’t control her body at all. We remember those days with horror and pain.
Now every little step, even with our help, is a proof that healing is possible. But we need to raise enough for surgery — the only chance to give her a future.
Every day we fight for Sofi’s progress.
She needs special equipment to grow and stay strong — and it all costs a fortune.
A standing frame ($4–5k) helps her train her muscles even at home. We were lucky to find one second-hand. Even shoes must be custom-made and replaced every 3–4 months.
Each step for Sofi is a challenge — and a victory.
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