By Ragheema Mclean
In June, brothers Abu-Talib (7) and Ayyub (4) from Constantia were diagnosed with Adrenoleukodystrophy (ALD), a rare genetic brain disorder with a very poor prognosis.
Their only hope for survival lies in undergoing bone marrow transplants.
In response, their family has launched the #HelpSaveBrothers campaign, organizing several bone marrow drives across the Western Cape.
Speaking on VOC’s News Beat show, the boys’ maternal aunt, Mashuda De Vries, shared the family’s struggle.
“Last month, Abu-Talib was hospitalized because he was not responding at home, and a few days later, test results revealed that he was diagnosed with Adrenoleukodystrophy. Since it’s a genetic disorder, they also tested Ayyub, and his test came back positive as well,” she noted.
Adrenoleukodystrophy (ALD) is a genetic disorder affecting the adrenal glands, spinal cord, and white matter of the brain. It is caused by mutations in the ABCD1 gene, leading to the accumulation of very long-chain fatty acids (VLCFAs) in tissues throughout the body.
This accumulation disrupts the normal function of cells, particularly in the nervous system and adrenal glands.
“The bone marrow transplant will unfortunately not heal the boys, but it will stop the disease. Essentially, we are stopping the progression of the disease, and that can only be done by getting donations of blood cells,” explained De Vries.
She emphasized the simplicity of getting tested, describing it as a three-minute cheek swab.
“If you are a match, the procedure is similar to donating blood.”
Since launching the campaign, the family has been organizing drives to get people swabbed and registered on the bone marrow registry, which is managed by DKMS, a non-profit organization dedicated to the fight against blood cancer and blood disorders.
“We’ve been looking for several events and reaching out to organizers to see if we can be part of them. We’ve also been contacting masjids to set up a table after Jumuah,” said De Vries.
Despite their efforts, the response has been slow, and the process has been challenging.
“To get registered as a donor is quite simple. You need to be between the ages of 16 and 55, complete a form, and do three swabs in your mouth. The tests are then sent off for analysis, and we await the results,” she explained.
De Vries stressed the importance of finding a match, even though the odds are 1 in 100,000.
“We are hoping that in the first round of results, we do find a match.”
Upcoming drives will be hosted at:
– Mr Cheap in Lansdowne on Saturday, July 27, from 9am to 5pm.
– Masjidus Sabr in Parkwood on Saturday, July 27, from 2pm to 6pm.
“Allah [God] has now granted us the opportunity to possibly save these two little boys. Keep them in your duas [prayers], but we urge you to act now – the boys need you,” urged De Vries.
The family encourages the public to join the bone marrow registry and follow their campaign on Instagram and Facebook @savingtwobrothers_aa for information on upcoming drives.
VOC News
Photo: Supplied
