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My life with Idiopathic Intracranial Hypertension
At only 18 years, in my matric year, I saw my dream of becoming a teacher slowly fading away - a dream I have had from a young age....
Nomsa Mtshali
Feb 16, 20224 min read
My Fireman’s journey with Fanconi Anemia from birth. By Gidion’s mom
My son Gidion was diagnosed with #FanconiAnemia (#FA) at birth, a very rare genetic disorder causing fatal bone marrow failure. He came...
Rare Diseases SA
Aug 14, 20193 min read
Daily life is a struggle but we couldn’t imagine not having Connor in our lives. #Dravet Syndrome
On the 21st of January 2011, our beautiful little boy Connor was born. He was perfect in every way and had no issues what so ever. Connor...
Rare Diseases SA
Aug 14, 20193 min read
What NOT to say to a grieving mother… Words by Tuschka Reynders
I thought long and hard before I posted this, since I don’t want to offend anyone. I know in my heart everything said to me is said with...
Rare Diseases SA
Jul 28, 20194 min read
Beautiful “Shanaya the First” gains her angel wings.
Little Shanaya Govender, or Shanaya the First as she affectionately called herself due to her love for Sophia the First and all things...
Rare Diseases SA
May 17, 20192 min read
A Mother’s Love and Dedication
Mc van der Merwe was born on 9 December 2014, after we had prayed for him for many years. He was such a beautiful baby boy, he did...
Rare Diseases SA
Feb 15, 20193 min read
What I hate about what we do…
There are aspects to working or running a charity that people do not realize. I would like to explain some of the things that we deal...
Rare Diseases SA
Feb 3, 20194 min read
Mnqobi – “The one who conquers”
Mnqobi – “The one who conquers” We were blessed with two boys, born on the 1st September 2018. Our son Mnqobi, baby Q for short, was born...
Rare Diseases SA
Dec 10, 20182 min read
Franklin Nomdoe’s Diagnosis with #NeuroendocrineTumour with spread to liver with Carcinoid syn
About 7 years ago, I noticed a peculiar reaction when I had something to eat or drink. Human nature has it, we try and self-diagnose...
Rare Diseases SA
Nov 20, 20183 min read
NEVER NEVER GIVE UP!!!!!!!!! Dante’s Journey with Schinzel-Giedion syndrome
Danté’s life journey started on 31 March 2015 and the doctors immediately noticed that something was not intact so he was admitted to...
Rare Diseases SA
Oct 18, 20189 min read
It is all about winning!! – written by Dad
I played cricket for many years and always took Russell, my #DownSyndrome son to the league matches so it was inevitable that he would...
Rare Diseases SA
Oct 18, 20181 min read
Learning With Leah..
My name is Salomie Crawford I am now 33 years old 12 years ago, I gave birth to a little girl she was my first baby and we named her Leah...
Rare Diseases SA
Oct 18, 20186 min read
We can see a glimmer in his eye and know things are about to change. #SSPE
Ryan had measles when he was 9 months old (before his vaccine was due) and was admitted to hospital and recovered and lived a normal...
Rare Diseases SA
Oct 15, 20183 min read
Our Brave and Always Smiling Warrior Björn
We were blessed with the wonderful news of being pregnant six months after I had a miscarriage. We had to take precautions so I was on...
Rare Diseases SA
Oct 12, 20185 min read
Surrogacy journey with Pompe Disease
Personal message In 2013 I was diagnosed with a rare Disease called Pompe Disease. Luckily Pompe Disease is a PMB so my medical aid helps...
Rare Diseases SA
Oct 12, 20181 min read
Nathan is truly a living testimony of faith, acceptance, courage and determination!
The story of Nathan Struwig Living with #SpinaBifidaMyelomeningocele and #Hydrocephalus 27/09/2018 The story of Nathan. A living...
Rare Diseases SA
Oct 10, 20182 min read
Teaching is my SUPERPOWER – Jean-Mari Van Zyl-Smit
In 2006 I started studying at Boland College for my ECD (Early Childhood Development) Grade R diploma. I was busy studying for about 6...
Rare Diseases SA
Oct 5, 20184 min read
Hannah is a beautiful angel with a big soul, who lives for the present. #Rett
My beautiful little girl, Hannah, was born on 28 March 2016. She was perfect. She was a happy baby, drank well and grew nicely. She...
Rare Diseases SA
Oct 3, 20182 min read
Megan is always in good spirits. Megan Fisher on #Syringomellia
Megan Fisher is a beautiful and happy 7 year old little girl. One day Megan came home from school and complained that her legs really...
Rare Diseases SA
Sep 25, 20182 min read
She still manages to smile beyond all her challenges #aHUS
Limari Rouxlé van Romburgh was born on the 7th of March 2017. At 3 months old she had a chest/respiratory infection. She was listless and...
Rare Diseases SA
Sep 21, 20181 min read
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