I WAS 21 WHEN I LEARNED MY CHILD WOULD DIE YOUNG: A Heartbreaking Confession of a Mother Whose Child SUFFERED FROM CYSTIC FIBROSIS!
In the new episode of the show "Na ivici", the president of the Association of People with Cystic Fibrosis of Serbia reveals how she faced a difficult period.
TL;DR
- The mother was diagnosed with cystic fibrosis when her son Vasilije was four months old, with an initial life expectancy of around 25 years.
- Innovative and expensive medications have significantly improved Vasilije's health, leading to weight gain, better lung function, and a near-normal chlorine level in his sweat.
- The state has increased its budget for rare diseases, enabling about a hundred patients to access these new treatments, though not all patients are eligible due to genetic mutations.
- The diagnosis put a strain on her first marriage, leaving her a single mother, but she found support from family and later her second husband.
- Vasilije attended kindergarten and school, with constant vigilance and support from caregivers and teachers.
- The mother emphasizes the importance of early screening for genetic diseases, as carriers may not be aware of their status.
- Her involvement with the Association of People with Cystic Fibrosis provided crucial support, advice, and a platform for advocacy.
- The association successfully advocated for the drug's availability in Serbia, with no reported side effects so far.