1year old baby diagnosed with Type 1 Spinal Muscular AtrophyBay of Plenty
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..?
Jess Nicholas' involvement (page creator)
Im involved because i have known Anna for 10+ years; before she was a mother and now with 3 children. I know what kind of mother she is and i know that she will be finding it extremely difficult that she has no control over this and can't "fix" her baby this time round. She is a strong very independent person who never asks for help, this is why i have taken it upon myself to open a Give A Little page for this family in the hope that we can raise enough money to see them right in the coming months on this heart breaking scary journey they are now on.
Use of funds
Funds raised will go toward on going medical appointments and to lessen any financial worry. Will help with any Financial strain when Anna or Jono have to take time off work for Heath. They will also want to take part in any trials that become available to them for this disease if it means spending more time with their baby..
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This page was created on 5 Aug 2017 and closed on 1 Dec 2017.