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Caregiver Story

Tuba’s Story

Mavi’s mum

Our journey with Wilson’s Disease began after routine blood tests showed that our daughter’s liver enzymes were elevated. At first, we never imagined it could be something so rare. We went through many tests, doctor visits, a liver biopsy, and finally genetic testing, which confirmed Wilson’s Disease.

Hearing the diagnosis was frightening. We had so many questions about her future, her health, and whether she would be able to live a normal life. Over time, we learned that early diagnosis and consistent treatment can make a huge difference.

Today, we focus on following her treatment, attending regular check-ups, and helping her enjoy life like any other child. There are still difficult days, but we no longer face them with fear. We face them with knowledge, hope, and determination.

To any family who has just received this diagnosis: you are not alone. Take things one step at a time, ask questions, trust your medical team, and don’t lose hope. Wilson’s Disease is a lifelong condition, but with proper treatment, children can grow, learn, play, and have bright futures.

If sharing our story helps even one family feel less alone, then it is worth telling.

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