Our son (2 months old) was diagnosed at birth with a rare bone disorder called Hypophosphatasia which is almost always fatal. Baby Connor has been accepted in the US (as there is no cure in SA) to undergo a trial drug which has had remarkable results with other suffering infants. The pharmaceutical company that administers the drug has offered to pay for all the trial related costs such as our stay over there, medical flights and the drug itself. Unfortunately they are not able to cover our son's ICU costs while abroad which is needed due to the risk of the Hypophosphatasia. We approached Discovery Health, our medical aid for financial assistance and was told to do an Ex Gratia application - which we did. Unfortunately our application was turned down today. I will never understand how Discovery Health can live with the decision to sentence our son to death. Without this drug our son will deteriorate painfully. In our declined letter from Discovery there wasn't even another solution to be offered from our so called medical AID. Just flat out NO! All that has been offered is a silly bag with gifts for our trauma of being in ICU. Thanks so much!
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