31 May 2017
GPS News was invited exclusively to an evening with the families of Beandri Booysen and Ontlametse Phalatse at Flycatcher Castle in Graskop. Beandri (12) is the only known person living with Progeria in Africa. Progeria is a rare premature ageing disease, also known as Hutchinson-Gilford Progeria Syndrome. According to the Progeria Research Foundation it affects 148 children in 46 countries around the world. Beandri is the youngest sibling to Jaco, Herman and Ruben. Their parents, Bea and Pieter Booysen of Pretoria, attempt to lead a normal suburban life, despite Beandri’s diagnosis at the age of one.
Before Ontlametse passed away, she asked her friend Dr Babalwa Funda KaMabhoza to plan something special for Mother’s Day for her and the Booysen family. The plan was to make these two mothers feel special. KaMabhoza contacted Manie Connoway of Flycatcher Castle and arranged for the two families to be hosted and entertained in true medieval style. Although Ontlametse passed away, the weekend went ahead and was planned to the tee, including princess dresses and crowns.
The families were treated to a delicious three course meal befitting royalty, and the evening was eternalised by Louisa Matthee of True Reflections Photography in Graskop. During the day the ladies were treated at the Pause Spa with facials at Sanbonani Resort in Hazyview.
“Beandri has learned to be her own person regardless of media exposure and stares from the public,” said Bea Booysen. “She attends a government school and receives no special treatment. We offer her a normal childhood; we just have to be more careful with her being so frail. We asked her best friend since grade one, Chante Spies, to accompany us for the weekend, so that Beandri will have a friend there.”
“Beandri has suffered a stroke that paralysed her whole right side, and is now using her left hand to write. She is receiving physio- and hydrotherapy. Physio plays a big role in the prevention her hips dislocating. Living with a child with special needs and conditions, isn’t easy, but she is our child and we love her unconditionally. As parents, we would not have it any other way, Beandri is our little girl, irrespective of the disease, and we are proud to be her parents.”
Editor’s note: “I really appreciate the invite to spend time with the families. Having lost a child to cancer at the age of four, it was not the disease that broke us as parents, but the insensitivity of the public. The stares and finger pointing at the bald head and frail figure caused more hurt because our son saw it as well. Bea also said rather ask what is wrong than to stare and whisper. Having a normal healthy child is a blessing! Having the privilege and honour of being a special needs parent, changes your life. You cannot think like before, you appreciate every little moment you have with your child.