The battle to breathe: An overseas drug could save 19-year-old Mikaeel’s life
Greenside, Johannesburg, South Africa – The family of Mikaeel Poonan, a 19-year-old young man diagnosed with cystic fibrosis, has launched a crowdfunding campaign on BackaBuddy in hopes of raising R600,000 to cover his life-saving medication for the next year.
Mikaeel was born in 2003 and has undergone nine surgical procedures in his lifetime, including the insertion and removal of ports and feeding tubes, as well as bronchoscopies. He is now due to undergo another procedure on his sinuses.
Cystic fibrosis is a genetic chronic illness that mainly affects the lungs and pancreas, causing thick and sticky mucus to collect in the lungs and digestive system, resulting in a high risk of infections and digestion problems.
Mikaeel’s lung function is currently at only 27%, and he is not eligible for a bilateral lung and heart transplant. If his lung function drops below 15%, he will have only two years to find a donor.
To support his ongoing medical expenses and potentially life-saving medication, Mikaeel’s family hopes to raise R600,000 through their BackaBuddy campaign. So far, they have raised over R167 000 with kind contributions.
Pictured above: Mikaeel with his mum and his core strength… His aunties Rubina, Aliya and Sameera.
The treatment they are hoping to access is a drug called TRIXACAR, which is currently only available in Argentina. While the price has dropped to $3339 per box, it still amounts to R58,000 per month, which the family is unable to afford.
TRIXACAR is a highly effective therapy for the underlying cause of cystic fibrosis and has shown dramatic improvements in key measures of the disease, including lung function.
Mikaeel is a keen musician who plays the guitar, paints, draws, and is very creative. He is also interested in cars and has plans to study 3D animation at the School of Audio Engineering in Rosebank. However, his health condition has put limitations on his studies and social interactions with his peers.
Morgan Grindstaff, a well known sufferer of Cystic Fibrosis once said, ‘Breathing with cystic fibrosis is like having a litter of kittens in your lungs that are clawing away.’ We couldn’t be more thankful for the support Mikaeel is receiving from the donor community. He is loved by all who meet him and has a smile that can light up the universe if given a chance at reaching our target.” – says Leila Poonan, Mikaeel’s mother.
Once Mikaeel’s campaign has reached R300 000, he will be able to receive his first 6 months of medication he desperately needs.