High school sweethearts RJ and Natasja Swanepoel have been married for 11 years. 7-month-old, Karien, is their only child and long-anticipated “gift from God”. This year in mid-October, baby Karien was conclusively diagnosed with SCID (Severe Combined Immuno-Deficiency) after a range of extensive and invasive diagnostic tests spanning two months and three separate hospitals. Despite the news of the dire diagnosis, the Swanepoel’s, after many weeks, had a measure of relief of finally knowing the definitive cause behind Karien’s spate of illnesses and began discussing the treatment plans going forward.
SCID, also known as “bubble baby syndrome”, is a group of rare disorders caused by mutations in different genes involved in the development and function of infection-fighting immune cells which in essence means that baby Karien has little to no immune system. Prior to her sudden onset of wide-ranging symptoms, baby Karien was a happy healthy baby who fed well and slept through the night. Natasja recalls Karien as an easy-going baby, who was full of strength and character and perceptive beyond her tender age.
Says Alana James, Executive Director at DKMS Africa, “baby Karien deserves a second chance at life. At only seven months old, she should be playing with her toys, instead, she has a life-threatening illness that’s threatening to cut her life short. We urge all people who are eligible to register to become stem cell donors to do so using our online registration platform.”
Baby Karien is currently being treated at Cintocare Pretoria and has three dedicated specialists attending to her. Due to her almost non-existent immune system, she is kept in isolation in the high or intensive care unit and has battled a number of critical conditions including mastocytosis with resulting biopsies, double pneumonia, polio, BCG, rotavirus, and a number of other acute infections. The adverse effects of multiple diagnoses and treatments have resulted in baby Karien being fed through a tube and even relying on a ventilator at some stage, with mom and dad taking turns around the clock to stay by her side.
Doctors have confirmed that baby Karien is now in need of a life-saving blood stem cell transplant from a matching donor to receive a second chance at life. The Swanepoels are ordinarily a private family but have had to turn to the public in their desperate plea to encourage as many qualifying blood stem cell donors to join the blood stem cell registry and donor centre, DKMS Africa and give hope to their beautiful baby girl and their family as a whole. The support that the family has already received has been overwhelming and Natasja talks about how she has learnt that an experience like this touches so many people and that it is important for them to feel that they can help and make a difference. “It creates a ripple effect and you should allow the good light to shine,” says Swanepoel.
DKMS Africa, formerly known as The Sunflower Fund, has registered over 11 million donors worldwide. Anyone who is healthy and between the ages of 18 and 55 is eligible to register and if one is a successful match, the process of donating blood stem cells is a relatively painless process, much like donating blood platelets. To register as a donor is a quick and simple process that involves a non-invasive mouth and cheek swab.
“Karien is such a special little girl who has touched the lives of so many people in such a short span of time. Finding a donor match for her will be an incredible blessing but if someone else finds their match through this process then it will be all the more meaningful. Please register today,” pleads Natasja Swanepoel.
Every new donor registered gives hope to baby Karien and many patients like her.
For more information or to register as a blood stem cell donor, please visit www.dkms-africa.org or call 0800 12 10 82, weekdays between 8.30 am and 4.30 pm.