Mom of Thirteen Year Old Begs Other Parents to Sign Petition

Mom of Thirteen Year Old Begs Other Parents to Sign Petition

R2 000 NEEDED TO REGISTER AS A STEM CELL DONOR

Thirteen years ago, Debi Schuiling was given just two weeks to live. Thanks to a ‘medical miracle’, at 49 this school co-founder and communications manager from Cape Town is relishing life. She survived aggressive and acute myloid leukaemia because a matching stem cell donor was found. 

For Cape Town mom of two, Adele Grosse, the situation looks dire. She discovered early this year that her 13-year old son Luca has leukaemia and desperately needs a stem cell donor.

Says Grosse: “I’ve been working closely with The Sunflower Fund, a South African non-profit organisation dedicated to creating awareness, educating the public and facilitating the registration process for people to join the South African Bone Marrow Registry (SABMR). Every year, hundreds of South African children and adults with blood diseases such as leukaemia and bone marrow failure, reach a stage where their only chance of survival is a bone marrow transplant from a healthy donor. In about 30% of cases, a fully matched donor can be found in the patient’s own family, most often a brother or sister. For the other 70% of patients, their only hope is to find a matched unrelated donor identified by the South African Bone Marrow Registry (SABMR).”

Grosse continues: “Increasing the number of donors listed on the national database offers hope to hundreds of South Africans with blood diseases such as leukaemia who have reached the point where their only chance of survival is a stem cell transplant. A larger Registry significantly improves patients’ prospects of finding matching stem cell donors in order to undergo life-saving stem cell transplants. Education, awareness and the recruitment and testing of donors are inextricably linked; the one activity cannot happen in isolation of the other. It takes just two test tubes of blood to become registered as a stem cell donor, but the tissue typing of each sample at the required molecular (DNA) level currently costs 

R2 000 per test.  Once the blood samples have been analysed, the individuals’ genetic information is then stored on the SABMR’s searchable database until the prospective donor turns 60 years old, which is the mandatory retirement age.”

A match has not been found for Luca. “I’m pleading with all moms and dads to sign a petition to challenge our government to step up and do what other governments do. Government needs to subsidise the R2 000 registration and test fee to become a stem cell donor. Our government subsidises ARV’s 100% for HIV patients, why not stem cells? My son and many other children innocently became sufferers of leukaemia and should be given the chance to a life. Please help by signing the petition on change.org or follow this link: Sign the Petition. Together we can make a difference!” Grosse concludes.

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