EASTERN Cape Health MEC Dr Pumza Dyantyi has assured the parents of Alrene Scheepers, a five-year-old Vastrap girl suffering from a rare disease, that her department has enough money to pay for the expensive enzyme-replacement therapy the child needs for at least six months.
“Her treatment is costly at about R48 000 a month,” Dyantyi said.
The MEC stepped in after Scheepers’ parents, Alfonso and Rene, struggled for more than 18 months to get Dora Nginza Hospital chief executive Dr Ntombi Quangule to order her medicine, despite several pleas from Alrene’s doctors.
“I understand that Alrene’s mother was under extreme pressure,” Dyantyi said.
She asked experts from the Red Cross Children’s Hospital in Cape Town to assess Alrene and help devise a treatment plan.
“I want to assure you the baby is in good hands,” she said.
Alrene suffers from a rare genetic condition called Gaucher’s disease. Her body is missing certain enzymes and cannot break down cellular material for re-use.
There is no cure but doctors can effectively treat her with enzyme-replacement therapy, which is a prescribed minimum benefit for all patients on a medical aid.
A benefactor, Don Pillay, is sponsoring medical aid for Alrene, but there is a year-long waiting period for new members so the state must carry the cost in the interim.
“I am very glad to hear that Alrene will get help from a medical aid. I hope it will work out,” Dyantyi said.
“I have asked our medicine depot to also order more medicine so that we can have six months of stock.”
Dyantyi said provincial heath professionals were in close consultation with doctors at Red Cross, which provided the first dosage of the treatment.
“When I suggest that we transfer her to Red Cross, it is not a sign that I do not have any faith in our specialists. It is just that she has a very rare disease and I want to make sure that we do everything we can,” she said.
Dyantyi said Alrene’s transport costs to Cape Town would also be covered if required.