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Nadia is a motivational and inspirational loving young lady. She is a young caring and loving “path changer” at the age of 13 now, in her own way. Nadia makes you realize, never to question why, that one needs to stay humble, believe and stay positive..
In vandag se episode gesels ons met Ellenique, n ongelooflike sang talent, ons kuier saam Hanno n kranige rugby speler en gesels ook saam Nadia oor haar storie, eksklusief op Vraatsig Kids
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Welcome to Hope for Nadia
I know I need help. I know I need prayers but for me mostly, I know I need hope!
Hi, my name is Nadia. I am unique as I am one of the children in the world who have been diagnosed at a very young age with KSS (Kearns Sayres Syndrome) a rare neuromuscular and slow progressive disorder. As far as our knowledge I am the only one in South Africa with this syndrome so yah, I’m not only unique but I’m also very special.
I’m no longer a child, I’m now a young lady. My one half is glad about this but my other half is sadden by this. When I was diagnosed eleven years ago I was too small to realize what was happening to my body and it was so easy to cry when things got too much for me. Today I’m older and wiser with the Internet at my fingertips. I now know what KSS is all about; that I may never live a normal life again. That I may have to depend on others to do things for me, which are so often taken for granted, for the rest of my life and that I may not live pass the age of 20.
Make no mistake, I still cry. I cry when it hurts, I cry when I need to go the bathroom and I cry when I see the look on my family and friend’s faces. BUT, the difference is that I now know what I have to fight and I now know that I am not alone.
There might currently be no effective way to treat KSS but I know that there are people working around the clock to find it. Nothing will give me more pleasure if I can play a small role in finding it. I am offering my body for testing so that not only I but others can be cured in years to come.
The next step is for us to find out of a stem cell transplant won’t help and this is where I need your help. I’m inviting you to come with my on this journey, to be part of it. Financially we cannot do it on our own.
In Hebrews we read that hope is the “an anchor of the soul“. I have placed my hope in the hands of our Heavenly Father and I am living my dream to share this hope with others in South Africa wherever I go, function after function, speech after speech!
We have every reason to grab God’s promise with both hands. I don’t know about you but I am not letting go!