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What you see is what you get – an MPS story told by Mukateko Mahonisi

What you see, is what you get with Amu Junior.

Amukelani Junior Maluleke is the only son of his dad and mom and he is a lovely, smiley person, and a little brother of his two older sisters.

This happy soul was born on the 11th of January 2012. He was born handsome and normal like any other child without any visible condition noticeable.

At the age of two, as loving and expecting parents we started to think that Junior should have started showing signs of talking and walking but there was nothing along those lines as yet. In the mid two to three years of age, we started seeing his skull getting a new but abnormal shape. We took him to different Doctors until we were referred to a paediatrician who diagnosed him with #Hunters syndrome MPS II.

When I look at my son, I see a strong but battling young man who tries to speak, share and interact; but his condition keeps on denying him these. I look at him and i continue to see a strong young man who plays with everything he comes across but not saying what it is.

Amu is a precious gift I have – irrespective of his gianticness, delayed speech, still on pampers at the age of 5, his arrogance just to mention few. He is a lovely son; playful and a cartoons fanatic. As parents we have learnt to accommodate his condition at all costs.

What we fail to understand is how a medical scheme fails to accommodate a rare condition treatment of a lovely kid like my son on the basis of the cost – like we have chosen the condition!

We are sharing this about our son as a sign of acceptance of the gift that God has given to us. Biblically as spiritual beings we know and understand that God has has given us this as a challenge because He saw that we are fit and equal to the challenge.

All I wish is that one day Junior can grow and get the best care ever, and that we will see him read that Daddy and Mommy love him so dearly.

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