Jamila's journey sparks rare disease awareness
Katlego Isaacs | Monday March 7, 2022 06:00
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.
However, even in South Africa after intensive testing and brain scans as well as six different combinations of several anti-seizure medications, medical experts couldn’t identify the root cause of the seizures.
This led doctors to send medical samples to the US for analysis into which they discovered in March 2019 that the cause of Jamila’s seizures were rare and fatal disease known as Batten’s disease which affects roughly three out of every 100,000 children in the world.
Batten’s disease is a group of 13 different genetic disorders that all negatively affect the body’s ability to expel cellular waste causing a buildup of proteins, fats and sugars in the system.
The buildup of cellular waste causes complications in the central nervous system that leads to seizures, vision loss, a loss of speech and thinking processes, loss of coordination, tremors, dementia and more.
Symptoms tend to begin around infancy up until the early teenage years, however adults can, in rare instances, develop Battens and experience milder symptoms that allow them to have a normal life expectancy.
Younger people however experience far more severe and fatal symptoms, of which no known cure exists and treatment is extremely expensive and inaccessible.
Treatment for Jamila involved a direct injection into the fluids surrounding her brain every two weeks meant to slow down the deterioration of her health but not stop it; this treatment came at a cost of over P200,000 per session, or roughly P500,000 per month.
The complexity of Jamila’s condition compounded with the unsustainable cost of treatment led doctors and her parents to fight resiliently to ensure she was as comfortable and well cared for until her passing in May 2021.
Jamila’s mother, Batul Zainy expressed her most sincere thanks to the community that donated to and supported Jamila’s cause from the beginning.
“Jamila was a warrior, an inspiration to us that stayed positive through everything. Even before she passed, the last thing she did was smile at her nurse,” Zainy said.
“Honestly, that’s all we can do, smile and continue moving forward because that’s what Jam-Jam would have wanted us to do,” she added.
Jamila’s father, Murtuza Bengaliwalla, said the entire experience ended up being positive stating “as tragic as everything was, I would have never done anything differently. I would do everything for her again”.
He also thanked the community that supported Jamila with specific emphasis on people who went out of their way to support Jamila such as a gentleman that earned only P1,300 per month who ensured that he donated P20 every month to Jamila’s cause.
That level of compassion and humanity was encouraged by both parents endorsing the importance of BORDIS and its mission to support people with rare diseases.
Jamila’s mother, Zainy, met the founder of BORDIS, Eda Selebatso, soon after the passing of her child and they have both committed to raising awareness and offering support for children with rare conditions like Jamila had.
Selebatso herself has four children, of which two live with rare diseases, one of which Selebatso had to donate one of her kidneys in order for her child to survive.
BORDIS aims to highlight the challenges people affected by rare diseases are going through in an effort to bring them to light and create a large-scale support network.
The organisation acknowledged the difficulties people have in accessing various advanced medical care in the country due to the nature of treating rare diseases, as well as the emotional toll caring for someone with a rare disease takes on someone.
Their organisation exists to serve people like Jamila and her parents, and ensure that they are never alone in their struggle by creating a mutual support system that makes the journey of everyone suffering from a rare disease much easier to bear.
In conjunction with rare disease day, which was observed on February 28, BORDIS announced that February 28 to March 6 will be Rare Disease Awareness Week.
Since the beginning of Rare Disease Awareness Week, 10 people affected by rare diseases contacted the organisation to join their support network and the organisation encourages more people to continue coming forward.
BORDIS welcomes all volunteers and people who wish to sponsor or support the goals of their organisation.