The Brave Fight
A story of hope and healing. “I'm Andi*, an ambassador for a very rare condition called Trimethylaminuria (TMAU or Fish Odour Syndrome)....
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Rare Diseases SA
- Oct 21, 2022
- 7 min
Patient Profiles: Wrongful Diagnosis
Having been misdiagnosed, I would have never imagined how life with Pompe would turn out. My name is Michelle Marais and I am a Pompe...
229 views0 comments
Rare Diseases SA
- Oct 21, 2022
- 4 min
Dad Diaries: Life with A Rare Disease Is Anything but Normal
As a dad, it was my absolute honour and privilege to be able to give my daughter one of my kidneys on June 22, 2021. This was exactly...
182 views0 comments
Rare Diseases SA
- Aug 16, 2022
- 3 min
MPS Warrior, Juan
Rare Warrior, Juan Venter was born on the 21st of April 2022 at 35 weeks. Juan was immediately placed in Neonatal ICU for 4 weeks while...
159 views0 comments
Rare Diseases SA
- Jul 8, 2022
- 4 min
Tuesdays with Eden
After multiple doctors’ visits, an ultrasound finally confirmed what we already knew- something was wrong with our baby girl. Then came...
144 views4 comments
Rare Diseases SA
- May 30, 2022
- 4 min
Determined Tina, our MS Warrior
It is one of those days you never forget… Sunday 14th June 2005. I had flown back from JHB for work, and it was a chilly day. My husband...
115 views0 comments
Rare Diseases SA
- Apr 4, 2022
- 4 min
Raising Aidan Powered by The Hemp Cream
Authentic Parenting From Raising Aidan Microwave Cupcake Mix to The Hemp Cream, here’s an incredible story of a mother’s determination to...
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Rare Diseases SA
- Apr 4, 2022
- 4 min
Bailey’s Surprisingly (Un)Normal Normal Journey
The new normal with Bailey and the fun we have as a family is no different to other families Our little Bailey came into the world on 7...
341 views0 comments
Rare Diseases SA
- Apr 4, 2022
- 3 min
Honouring Rare
Shining the light on the 1 in 15 people affected by rare diseases, including her own two rare warriors, Mrs. Isaacs tells her own...
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Nomsa Mtshali
- Feb 16, 2022
- 4 min
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....
186 views0 comments
Rare Diseases SA
- Aug 14, 2019
- 3 min
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...
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Rare Diseases SA
- Aug 14, 2019
- 3 min
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...
83 views0 comments
Rare Diseases SA
- Jul 28, 2019
- 4 min
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...
84 views0 comments
Rare Diseases SA
- May 17, 2019
- 2 min
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...
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Rare Diseases SA
- Feb 15, 2019
- 3 min
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...
135 views0 comments
Rare Diseases SA
- Feb 3, 2019
- 4 min
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...
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Rare Diseases SA
- Dec 10, 2018
- 2 min
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...
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Rare Diseases SA
- Nov 20, 2018
- 3 min
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...
99 views0 comments
Rare Diseases SA
- Oct 18, 2018
- 9 min
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...
47 views0 comments
Rare Diseases SA
- Oct 18, 2018
- 1 min
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...
7 views0 comments
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