Since then his life had taken a drastic turn, his mother Adele Grosse said.
“We used to spend so much time outdoors, now Luca’s life revolves around trips to MediClinic Constantiaberg and home.”
A fellow pupil saved his life Grosse said: “A boy at Luca’s school joked and told him that he has a disease, as a mother I was highly offended and asked why? Then Luca showed me his leg. I was in shock when I saw that the capillaries in his leg had burst leaving him with a red rash-like wound. Immediately I did research and took him for tests, test results confirmed my biggest fear that my child has All.”
Grosse started working with the Sunflower Fund when Luca was diagnosed with leukaemia.
“I gained insight into the logistics for becoming a stem cell donor and I was shocked that it costs R2 000 to be a donor which is already a subsided fee as the full test cost R4 000.”
In countries like the US and the UK tissue type testing is 100% subsidised by their government, toGrosse said. This informed her decision to start a petition called the “Adele Grosse Petition”.
She encouraged the public to sign the petition which challenged the government to step up and pay the R2 000 as a subsidy for tissue type testing. Chief executive officer of The Sunflower Fund, Alana James, has been working with the National Health Department regarding subsidy for tissue type testing. The Western Cape Health Department, due to a shortage in funding, last year declined The Sunflower Fund a subsidy.
Western Cape Health Department communications head Marika Champion said: “Western Cape Government Health is responsible for the total spectrum of public health issues, committed to do the greatest good to the greatest number of all health clients in our province. Within the context of restricted funding, the Department was unable to renew its financial support of The Sunflower Fund. The department continues to admire the work performed by the fund. The department continues to support a broad range of awareness issues affecting public health and remains committed to providing quality care to the users of public health care.”
James said that education, awareness and recruitment was not an issue for The Sunflower Fund. In January the fund covered the cost of about 198 donors. The Sunflower Fund uses 100% of its donations towards putting people on the SA Bone Marrow Registry, and covers all operational cost.
“The Sunflower Fund is not a charity, therefore we need support from governments and public to keep changing lives,” said James.