Supporting Heathy

On Friday 4th of August 2017 my best friend Anna got the worst type of news any mother would be devistated to receive - her youngest baby Heath was diagnosed with TYPE 1 SPINAL MUSCULAR ATROPHY. After months of testing and scans this sadly is the final diagnosis. SMA is a rare genetic disease, about 2 children born in New Zealand a year are positive. All muscles are extremely weak. SMA affects all muscle systems including sucking, swallowing, digesting food and excretion. A common cold can easily turn into pneumonia which is what usually takes the lives of children, along with "respiratory failure" or when they no longer have the lung or chest muscles to be able to breathe on their own. Heath turned 1 a few months ago (he has already beaten the odds of not surviving past 6months old) and They have been told that there is a 87% chance that He will not survive this horrible disease past the age of 4 years old. This is absolutely devastating and my heart is broken! I cant imagine or begin to think how they felt when they were delivered this blow.. how does one possibly accept having this information told to them regarding their babies..?