Little girl gets go-ahead for expensive treatment

2015-07-01 06:05
: 
Renee Scheepers and her daughter Alrene (5) who suffers from Gauchers’ disease.
 PHOto: 
werner hills

: Renee Scheepers and her daughter Alrene (5) who suffers from Gauchers’ disease. PHOto: werner hills

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PERMISSION to access very expensive enzyme replacement treatment has brought hope to the parents of little Alrene Scheepers of Booysen Park.

Five-year-old Alrene suffers from type 1 Gaucher’s disease. It’s a chronic illness that according to WebMD.com is caused by an enzyme not working right to break down a certain type of fat. The fat then builds up, especially in the liver and spleen.

The only available treatment for Alrene costs thousands of rands.

After a year-long struggle to get her daughter the necessary care, PE Express spoke to Renee Scheepers right after the Eastern Cape Department of Health finally agreed to the treatment.

“This is a long time coming and I can’t tell you how happy I am to hear that my child will finally get the attention she deserves from the Dora Nginza hospital,” said Renee.

Renee who lives in the Vastrap informal settlement said she is extra worried about her child’s health during winter.

“She bruises easily and is always tired. It’s becoming more of a struggle now because it’s cold. We stay in a shack, and the effects of the environment are visible on her health everyday. It pains me to see my child suffer like this knowing there is little I can do. I wouldn’t wish this pain on any parent. But to see her smiling at me and her father gives me great comfort and I know we will be OK,” said Renee.

While the Scheepers family is relieved that the health departement have approved their request, Renee said they will remain sceptical until the treatment begins.

“They said to us that they have no knowledge of this disease and in order to administer the enzymes they will have to train someone. You can imagine that it will take time; this is also a frustration to us,” Renee added.

Eastern Cape Department of Health spokesperson Sizwe Kupelo had not responded to calls before going to print.

In a letter to the EC health department, Alrene’s doctor, Johani Vermeulen, said Imiglucerase, the medication used in the treatment of Gaucher’s disease, is only produced by Genzyme.

The cost can range from a little over R20 000 to R300 000.

Vermeulen said even though the treatment seems expensive, the alternative lifelong regular platelet transfusions would be equally expensive. Vermeulen’s letter goes on to say that withholding treatment from Alrene is not in keeping in with the Child Act or her right to life-saving treatment.

Renee said all she wanted was a safe home for her child and a chance to live a better life. “We need help and if anyone can help my child or my family I would really appreciate this,” said Renee.

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