Help baby Divan in his fight against Spinal Muscular Atrophy
The test results took two months to come back from the lab, and in August the family received the results that Divan tested positive for the disease.
Although the odds are stacked against him, eight-month-old Divan Prince is a happy baby.
Described as a real little warrior in every aspect, the Sonneveld infant was recently diagnosed with Spinal Muscular Atrophy (SMA), a genetic neuromuscular disease that causes muscles to become weak and waste away.
It affects the SMN 1 gene which is responsible for producing the SMN (survival motor neuron) protein. This protein is essential for motor neurons to survive and function properly.
Motor neurons are nerve cells responsible for transmitting signals to muscles for voluntary movements. In absence of sufficient amounts of motor neurons, the muscles become progressively weaker.
Children with SMA suffer from weak limb movement, and later on, suffer from severe feeding and breathing problems due to progressive muscle weakness.
They are susceptible to pneumonia as they cannot breathe properly or cough efficiently to clear secretions. Divan was born on March 9 and, after a short stay in the neonatal intensive care unit, was discharged from the hospital and sent home.
He was given the all-clear from a paediatrician during his six-week check-up, but at nine weeks he was taken back to the paediatrician as he was restless.
His mom Merike Prince was concerned about his development as she had noticed that his physical ability had deteriorated since his last visit.
Divan was promptly admitted to hospital and a series of tests and scans were performed in order to investigate and make a diagnosis.
He was discharged two days later with no definitive answer and still awaiting the results from some of the tests performed.
With no significant improvement and with all tests yielding no answers, the family followed up with the paediatrician a short while later. It was suggested that Divan be tested for SMA.
The test results took two months to come back from the lab, and in August the family received the results that Divan tested positive for the disease.
They were referred to a paediatric neurologist, paediatric pulmonologist as well as neurodevelopmental physiotherapist.
They have since seen all the specialists who have confirmed the diagnoses. The neurologist further classified Divan as SMA Type 1 (aka Werdnig-Hoffman Disease) one of the most aggressive forms of SMA.
The family was informed there are no treatment options available in South Africa, and that treatment is predominantly only available in America and the European Union at exorbitant rates. In South Africa, medical aids do not provide cover for SMA as a prescribed minimum benefit condition.
With the exception of hospitalisation, the disease is covered from day-to-day savings benefits only, which with the amount of care an SMA patient needs is not nearly sufficient to give them the quality of life they deserve.
A crowdfunding campaign on the BackaBuddy platform has been set up where community members can help Divan’s family ensure he receives the care he needs.
To donate, visit https://www.backabuddy.co.za/champion/project/divan-prince
Donations can also be made into the following account:
Bank name: Standard Bank
Branch name: Lakeside Mall
Branch number: 3042
Account number: 10146483535
Account type: Current swift
Code: SBZAZAJJ
