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Jamila's journey sparks rare disease awareness

Friday, March 04, 2022 | 1110 Views |

The young Jamila (middle) and her parents

Six-year-old Jamila Bengaliwalla’s passing in 2021 from a rare illness, Batten’s disease, has motivated her parents in conjunction with the Botswana Organisation For Rare Diseases (BORDIS) to support the needs of people affected by rare diseases across Botswana and raise awareness about it.

Jamila’s journey started in May of 2018 when at the age of three she suddenly began experiencing bouts of increasingly severe and unexplainable seizures.

Seeking extensive medical attention across multiple hospitals in Botswana, local doctors couldn’t pinpoint the cause of the seizures leading Jamila’s parents to seek medical advice in South Africa.

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