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What would you do if your child gets diagnosed with leukaemia and won't survive unless he gets a stem cell donor? But can't find a match?
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.
But there aren't enough donors on the South African Bone Marrow Registry. Partly because people don't know they can become donors and what it entails, and partly because you have to pay R2,000 for your blood samples to be analysed. And who is going to pay R2,000 to be placed on a register? The Sunflower Fund does try to help with the registration fees but they have little funds.
That's why Adele feels that government should subsidise the R2,000 registration fee. “I’m pleading with all moms and dads to sign the 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."
To sign the petition, which will be sent to Health Minister Pakishe Aaron Motsoaledi, click here.
Says Adele: “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 SABMR.”
Such a donor saved Debi Schuiling's life. Thirteen years ago, she 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.
“Increasing the number of donors listed on the national database offers hope to hundreds of South Africans with blood diseases who have reached the point where their only chance of survival is a stem cell transplant," says Adele.
"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.
"Together we can make a difference!” says Adele.
How can I become a stem cell donor?
If you are healthy and between 18 and 45, you can be a donor. People of all ethnic groups are called to register to increase the likelihood of finding matches for those waiting for a donor.
"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."
When you're a match, you'll be called to donate stem cells. The most commonly used procedure called peripheral blood stem cell collection is simple and just slightly uncomfortable – like donating blood, not as invasive as donating bone marrow.
To register to become a stem-cell donor or donate towards the registration and test fees, visit The Sunflower Fund website.
