19-year-old Mikaeel Poonan’s family is raising funds to obtain a potentially life-changing drug to treat cystic fibrosis. [Picture: Supplied]
19-year-old Mikaeel Poonan has fought a long and hard battle with cystic fibrosis. After years of pain, a promising drug trial finally offered a glimmer of hope on the horizon. But this hope was short lived as the trial was halted with the onset of the Covid-19 pandemic. Now, hope has returned – with a hefty price tag.
Shortly after birth, troubling symptoms, such as dehydration unaccompanied by illness, showed up. It would be a while before a doctor ultimately determined cystic fibrosis to be the culprit.
“Mikaeel used to be dehydrated all the time and it was first thought to be a kidney disorder. It took us one-and-a-half years to get to the clinic in Jo’burg Gen,” said his grandmother, Shamima Kola Poonan.
Struggling to hold back her tears, Poonan spoke of the moment the family learnt of Mikaeel’s fateful diagnosis. It demanded abrupt changes to the family’s lifestyle, she said. It even forced the family to relocate from the far-flung Mahikeng, North West, to Johannesburg.
Cystic fibrosis (CF) is a genetic disorder that affects the respiratory, digestive, and reproductive systems. It is caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is responsible for producing a protein that regulates the movement of salt and water in and out of cells.
This causes thick, sticky mucus to build up in the lungs, pancreas, and other organs. This can lead to chronic lung infections, difficulty breathing and digestive problems.
“We’ve been experiencing hospitalisation after hospitalisation. Cystic fibrosis children aren’t able to eat; Mikaeel was tube-fed for three years from the age of three,” said Poonan, highlighting the toll the disease had taken on the family. “It’s just been a very long journey.”
CF demanded that Mikaeel Poonan be subject to daily nebulisation and physio, which can be exhausting and take much of his time. Throughout the ordeal, Mikaeel remains “a very positive child”.
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Treatment
CF is a lifelong condition with no cure, but treatments such as antibiotics, mucus-thinning drugs, and nutritional support can help manage symptoms and improve quality of life. However, such dire treatment comes with a heavy price tag.
An American company, Vertex, had previously invited Mikaeel Poonan to participate in a trial for a new drug. Hopes of the trial were dashed when the pandemic struck.
“He is the only one in the world that has it. The other person that had it has passed on; it was a French boy. Vertex was quite happy to have him on the trial, but when Covid came they abandoned the trial in South Africa,” said Poonan.
All hope is not lost. There is a potentially life changing South American drug manufactured by Kaftrio, which can be legally imported into South Africa. However, the cost of a year’s supply is R600 000. The family has therefore set up a Back-A-Buddy campaign to raise funds for Mikaeel Poonan’s treatment.
Julie Allie and Shamima Kola Poonan further discussed the prospects of improvement for Mikaeel Poonan with the drug. Listen to the full discussion here.
