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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 our lives and spread happiness wherever she went. She was fine until six months when we have noticed that she has still not gained any head control and was unable to sit on her own, that prompted us to go to see a pediatrician. After an evaluation he as recommended that we go to see a neurologist for further investigation. A week in hospital running tests and trying to clear up a chest infection finally gave us an explanation as to what’s causing our angel from not being able to meet her milestones with regards to her movement.

The news was devastating and a huge surprise. Our angel has been diagnosed with a rare genetic condition. A condition that causes progressive loss of movement and muscle weakness due to muscle wastage. #SPINALMUSCULARATROPHY(SMA) She has been diagnosed with Spinal Muscular Atrophy Type 1. As parents listening to the doctors explanation made no sense at that time. Learning that your child might only live till the age of 2 is devastating for any parent. Learning that there were currently no cure for her we are forced to just wait it out.

A miracle drug call #spinraza has been developed but in south Africa it works out to be too expensive for even the richest of families. With a cost of a min of R12 million for the 1st year and R6 million every year after leaves it affordable for all affected. Currently she is 19 months old and a real fighter she continues to bring a smile to all when she smiles and holds her teddy with love. Watching YouTube and troubling her us are the highlights of our day. Having a child with a rare condition teaches you to appreciate life a whole lot more and teaches you to be more compassionate and caring. It does teach you the value of LIFE!!!

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