Six-year-old Dhia Amanda was born with GNAO1 neurodevelopmental disorder, an extremely rare genetic condition that causes severe dystonia – uncontrollable twisting, stiffening and violent spasms brought on by electrical storms in the brain. Thanks to the fundraising efforts of Suriana Welfare Society and Free Malaysia Today, Amanda was able to undergo deep brain stimulation (DBS) surgery, which provides hope for relief for her symptoms. On Beyond The Diagnosis, we catch up with Amanda’s father Saifol Sujak Sulaiman, to find out how she’s doing now. We also speak to Rachel Ho from Suriana Welfare Society about Amanda’s fundraising journey, and to consultant paediatric neurologist Dr Lim Wei Kang about how rare diseases like GNAO1 develop.

Beyond The Diagnosis is a series that goes beyond a medical diagnosis to explore people’s personal experiences, their challenges, as well as the impact of their health condition on their loved ones. Suriana Welfare Society is supporting families of children with rare diseases through advocacy and fundraising.