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I am so proud of my son. Chrisjan
My name is Helene and my son is Chrisjan. He is 13 and has been diagnosed with Ehlers-Danlos Syndrome hyper mobility. I have two children...
Rare Diseases SA
May 16, 20182 min read
What you see is what you get – an MPS story told by Mukateko Mahonisi
What you see, is what you get with Amu Junior. Amukelani Junior Maluleke is the only son of his dad and mom and he is a lovely, smiley...
Rare Diseases SA
May 15, 20182 min read
I blamed myself – Yandisa Xulu
On 04/01/2012 I gave birth to strong, healthy, wonderful baby boy Yandise Xulu. Even though I knew it going to hard rising a kid by...
Rare Diseases SA
May 15, 20181 min read
How my story unravelled – Simon Bond
My name is Simon Bond. I’m now 23 years old. My story only started to unravel as a teenager. In 2008, when I was 15 years old, I had a...
Rare Diseases SA
May 15, 20184 min read
A shock to our family – Granny Carol
At the age of on a visit to my son’s place I realized the size of Geodrick’s head to be abnormal and advised parents to take him to...
Rare Diseases SA
May 15, 20182 min read
He is triumphing over all the odds – Diane May
Matthew May is a happy, carefree little boy of 4 years, who is completely unaware that he is a success story triumphing over all the...
Rare Diseases SA
May 15, 20183 min read
There are new challenges along the way – Clarenche Jacobs
My daughter Chade was diagnosed with #TuberousSclerosis Complex 2015, she was three at the time. It all started with one of her eyes...
Rare Diseases SA
May 15, 20182 min read
A journey never planned or asked for My Life with Lupus By Shivani Pillay
The great Albert Einstein said, “In the middle of difficulty lies opportunity” No truer words could be spoken in my quest in fighting...
Rare Diseases SA
May 10, 20183 min read
Abby is a very bright light in our lives #Osteogenisis Imperfecta By Abby’s Mom
Abby was diagnosed with OI type III (commonly known as brittle bones) at birth. She had 27 fractures and completely deformed legs. From...
Rare Diseases SA
May 8, 20181 min read
LIVE EVERYDAY AS IF IT’S GOING TO BE YOUR LAST #DPO with Pulmonary Hypertension By Gregory Gat
I was extremely active ran marathons – weight training 2 hour cardio session in the morning, 10km afternoon run in the week and far run...
Rare Diseases SA
May 7, 20182 min read
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