top of page
blog
Search
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
67 views
0 comments
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
13 views
0 comments
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
20 views
0 comments
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
17 views
0 comments
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
15 views
0 comments
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
18 views
0 comments
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
19 views
0 comments
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
30 views
0 comments
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
23 views
0 comments
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
174 views
1 comment
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
30 views
0 comments
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
20 views
0 comments
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
13 views
0 comments
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
24 views
0 comments
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
33 views
0 comments
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
17 views
0 comments
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
16 views
0 comments
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
100 views
0 comments
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
17 views
0 comments
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
15 views
0 comments
bottom of page