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Never give up on your special miracle Ben-#SotosSyndrome
Hi, my name is Jolene Rheeder from Delmas, Mpumulanga. I’m a proud mother of 3 beautiful children. My oldest son Hennie is 16. My...

Rare Diseases SA
Sep 14, 20181 min read


Smiling Fighter- Layla-Rose #CF
Our smiling warrior champ Layla-Rose was born on 21 November 2017. She was perfectly planned for. Layla has an older brother so we were...

Rare Diseases SA
Sep 10, 20186 min read


Phenyo is our Ray of Sunshine.
Phenyo Mackenzie Moropa was born on March the 7th 2016 with a rare birth defect called Tibial #Hemimelia. This disease is so rare that it...

Rare Diseases SA
Sep 6, 20182 min read


I am thankful for this journey #Goldenhar Syndrome
My name is Aneesa, and I’m 24 years old. I am originally from La Mercy which is a little village located on the dolphin coast – we now...

Rare Diseases SA
Sep 4, 201819 min read


We were told to take him home & give him all the love & time that we had – Chantelle
Hanno was born on 15 February 2011. He weighed in at 3,001kg and everything was perfectly normal. The gynaecologist told us that...

Rare Diseases SA
Aug 31, 20186 min read


I’m not planning on slowing down anytime soon. As a family we take every day as it comes.#SMA
My name is Kerry Walsh, I was born on the 22/10/1997. I was born in a set of #fraternaltwins. Around the age of one my parents had...

Rare Diseases SA
Aug 29, 20183 min read


I am just living life the best way I know how. #Crouzon’s Syndrome
By: Liezel My name is Liezel, I am a 30-year-old female living with Crouzon’s Syndrome. Crouzon’s Syndrome is a rare autosomal dominant...

Rare Diseases SA
Aug 27, 20181 min read


To be told that there is nothing you can do for your child is the most painful thing ever! #SMA
Iman Casoojee January 2010, a new year full of hope promise and prosperity for South Africa. But a time bomb had been placed on my child....

Rare Diseases SA
Aug 21, 20186 min read


Things to take your Chronically Ill friend in hospital
When you first get sick, the amount of cards, flowers & visits is almost such that you can’t keep up with everything. There isn’t a day...

Rare Diseases SA
Aug 21, 20186 min read


Having a child with a rare condition teaches you to appreciate life a whole lot more.#SMA
By Arushi Nundkissoor Our greatest blessing. On the 25th of July 2016 we were blessed with our precious baby girl Arushi. She came into...

Rare Diseases SA
Aug 20, 20182 min read
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