Donors needed to save young lives – Benoni City Times
By daniellenierenberg
Three children are fighting for their lives and require stem cell transplants to cure their blood cancers and disorders.
Rayaan (four months), Emily (five months) and Neo (7) all share one commonality: being diagnosed with life-threatening blood diseases. They are waiting on blood stem cell transplantations from unrelated donors.
Between 800 and 1 000 children in South Africa are diagnosed with cancer annually.
However, this number does not account for the almost 50% of cases of childhood cancer that are never diagnosed, due to a lack of knowledge regarding the disease and how it presents in children.
Because children still experience growth spurts within a short space of time, this may cause blood cancer and disorders to spread quicker and more aggressively. Therefore, diseases affecting young children are those most often occurring in the developing cells, such as bone marrow, blood, kidneys and nervous system tissues.
Rayaan, Emily and Neos families lives have been turned upside down by blood cancer and disorders.
Rayaan was diagnosed with life-threatening acute myeloid leukaemia when he was just eight weeks old. AML usually requires immediate treatment and for Rayaan, bone marrow or blood stem cell transplant is his only chance of a cure.
Without a successful transplant, Rayaan will have to endure continued chemotherapy and isolation, which will expose him to the terminal effects of infection. Rayaan is now in search of an unrelated matching donor, but the low representation of diverse stem cell donors across the country and in the global registry hampers the chances of saving this courageous baby.
Arlene said watching her son endure this pain is heartbreaking and there have been some very dark days. At one point, he had to be resuscitated after a spinal lumbar puncture, but their courageous little fighter battled on and still wakes up every day with a smile on his face.
Please help my baby to live. He is just too little to suffer like this. Dont delay, you could be his perfect match, Arlene added.
Meanwhile, five-month-old Emily from Johannesburg has been battling a blood disorder following her diagnosis in November at only three months. She was diagnosed with juvenile myelomonocytic leukaemia (JMML) and is undergoing treatment, hoping a stem cell transplant will be performed soon.
As in Rayaans case, Emilys best chance at survival is a blood stem cell transplant. Dr Theo Gerdener, a clinical haematologist at Albert Alberts Stem Cell Transplant Centre and medical director at DKMS Africa, said:
JMML, which is especially prevalent in young children, is a rare cancer of the blood and occurs when white blood cells, known as monocytes and myelocytes, mature abnormally. This cancer can occur spontaneously or, sometimes, is linked to other genetic disorders.
Leukaemia affects white blood cells and bone marrow, and alarmingly, childhood leukaemia accounts for around 25% of all cancer in children. With proper diagnosis and management, including stem cell transplantation, childhood leukaemia can be cured in 85% to 90% of patients.
According to Natalie, Emilys mother, her daughter has already endured multiple blood and platelet transfusions, frequent injections and other medication, lengthy hospital stays, including isolation and ICU admission, as well as surgery to insert a port in her chest for intravenous administration.
Her parents desperately hope to find a stem cell donor match through DKMS global stem cell registry and donor centre to provide them with this one in 100 000 chance.
Were keeping positive and are hoping a match will be found for Emily. We hope she grows up, has a normal childhood and becomes a beautiful, bright young lady, said Natalie.
Neo was diagnosed with Fanconi anaemia in April 2019 at only four years old. A couple of years earlier, his older sister, who was also diagnosed with the same blood disorder, received a stem cell donor transplant, giving her a second chance at life.
Their dad, Phoebus, recalls the late-night rushes to the hospital, overnight stays and time away from work, as both parents grappled with the unusual, but persistent symptoms in their child, as Neo endured uncontrollable nosebleeds, debilitating fatigue, prominent bruising and innumerable fevers and infections owing to his compromised immune system.
Neo is transfusion-dependent and receiving steroid treatment, among other things. He is also searching for his second chance at life through an unrelated donor match to provide him with a life-saving blood stem cell transplant.
A donor with the same ethnic background as a patient may be a better match than one who comes from an entirely different background.
Globally, there are a low number of registered donors among the black, Indian and mixed-ethnic populations, meaning the pool of prospective matches is significantly lower.
For patients like Neo, a substantial increase in the registration of black donors will directly impact his chances of a successful transplant from a matched donor.
Neos family has thrown its support behind DKMS Africa to champion the cause of education and awareness around blood diseases.
Also Read:Young couple says I do with the help of generous donors
People need to be aware of these medical conditions and empower themselves with the knowledge. Some people and organisations are there to help. People should not be afraid to reach out, said Phoebus.
If you are in good health and between the ages of 18 and 55 and considering joining the registry, visit http://www.dkms-africa.org or call 0800 12 10 82, weekdays between 08:30 and 16:30.
Once you have registered online, a swab kit is sent to you via courier and then collected when you have completed the process (at no cost to you). Take action, save a life!
Also Read:Become an organ donor and help save a life
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