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I blamed myself – Yandisa Xulu

Writer's picture: Rare Diseases SARare Diseases SA


On 04/01/2012 I gave birth to strong, healthy, wonderful baby boy Yandise Xulu.

Even though I knew it going to hard rising a kid by myself, I didn’t mind because he was healthy – or so I thought. He was just a naughty, hyper kid who got admitted at least 3 times a year in hospital, and we just thought that when he grew older it would become better; but it didn’t.



Around May 2 years ago he was referred to a neurologist at St Augustines, and this was where we realised that it is way bigger than I thought. He was diagnosed with #MUCOPOLYSACCHARIDOSIS.



My life took a hit. Everything was falling apart the thought of losing my son. I was not able to sleep at night, I prayed for miracle, I blamed myself, I researched this MPS TYPE 1 &2 the more research I did was the more I lost hope on the dream I had for my son. Our little world crashed within a month.



I couldn’t give the life he need when was just normal kid; so how was I going to manage to giving him this a life now, when he is a special kid? Well, days are not the same but we holding hoping for miracle because he has yet to receive his medication. I will never give up.



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