Something isn’t right. That’s what Stefanie de Zeeuw (29) from Balkbrug thinks when she holds her daughter in her arms for the first time. Daughter Sofie (now 2) appears to be the only one in the Netherlands with a rare and incurable metabolic disease. The family celebrates every moment. But knowing that Sofie does not grow old hurts a lot. “It was her birthday recently and you think: are we going to celebrate this day next year too?”
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Cheerful Sofie (2) shines despite her merciless illness: ‘But does she ever celebrate her birthday again?’
