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I am strong and will get through anything coming my way!!!
By Samuel Nicolas Broekman My Mom and Dad wanted another baby and were blessed in April of 2014 to find out that another baby was on the...

Rare Diseases SA
Sep 20, 20185 min read


I am extremely grateful that he is able to live a normal live given all the circumstances-Hardus
My son Hardus Scholtz was born at 38 weeks with a birth weight of 2.49 kg, healthy and nursing well. (He was the only one oF my 3...

Rare Diseases SA
Sep 19, 20182 min read


They see a child who cannot speak, I see a miracle that does not need words. My Angel Gabriel
Meet Gabriel: Born in February 2002, miracle child of mine! “ I thought I would have to teach my child about the world. Turns out I have...

Rare Diseases SA
Sep 19, 20186 min read


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


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


Janco VS Falconi Anaemia
By Janco’s Mom Imagine starting the day as usual with a healthy, happy child in the home. You are going for a visit to the paediatrician...

Rare Diseases SA
Aug 16, 20183 min read


My message to my #RareWarriors is, please do not give up hope- Khadeeja on Gastroparesis
My name is Khadeeja.. I am 21 years of age. The journey of life with a rare disease began for me in March 2016 when I was 19 years old....

Rare Diseases SA
Aug 15, 20183 min read


We are devastated to live without our Riley, but we are so proud of his legacy! #OurRareWarrior
Riley was born on the 1st of November 2012. He was so precious. Riley sailed through his first weeks as a new born, he had a little...

Rare Diseases SA
Aug 13, 20187 min read


We celebrate every milestone and achievement-Daniels Journey with Psoriasis
Daniel was induced at 37 weeks and born with #NeonatalPneumonia and at 6 weeks started developing a rash on his neck which after numerous...

Rare Diseases SA
Aug 6, 20185 min read


Life with a child with specials needs comes with a different set of challenges and rewards.-Emily
When Emily Bean was born in 2011, her parents were prepared (as much as they could be) for the fact that she had a #cleftlip and...

Rare Diseases SA
Aug 2, 20182 min read


Shanaya The First – Supergirl
Meet our beautiful supergirl Shanaya the First who is currently battling Stage 4 #EwingSarcoma in her left humerus with #metastasis in...

Rare Diseases SA
Jul 16, 20184 min read


A tough battle with MG, But Megan has the most amazing smile ever! Myasthenia Gravis- Megan Hunter
My journey with #MyastheniaGravis Growing up I was a healthy, happy child. I never had any of the usual childhood ailments mumps, chicken...

Rare Diseases SA
Jul 3, 20187 min read


Despite not knowing what the future brings I choose to remain Positive Myasthenia Gravis-IIze Fourie
I was diagnosed with #Fibroelastosis of the heart when I was three days old. My parents lost their first child to the same disease a few...

Rare Diseases SA
Jul 3, 20182 min read
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