Aviana – a brave little angel
Aviana is a bright, happy and sociable little 5 months old who brings love and laughter to all who meet her. But heartbreakingly she will not be with us for very long. At just 3 months of age, she was diagnosed with type 1 SMA (spinal muscular atrophy) a genetic condition which affects the motor nerve cells in the spinal cord.
There is no cure, she will not survive and most babies with SMA type 1 are lucky to see their 1st birthday.
The disease wastes away the muscles needed for physical activities. She will not crawl or walk and will lose the ability to swallow, which means she will need to be tube fed. She will eventually lose the ability to breathe as her chest muscles will be too weak. It’s a cruel condition that robs her of her physical ability.
To give her the best chance possible Avi’s parents – Johno and Bethan – have relocated from Darwin to Sydney over Christmas, for pioneering treatment for their daughter. They have been doing it tough being away from family and friends. Avi needs ongoing treatment as her condition progresses, which means from next year, the family will be flying in and out of Darwin every few months.
Time is so precious.
They have a bucket list for Aviana, which they are gradually working through, to make as many memories as possible, with their bubbly little girl.
There is nothing anyone can do to change the reality for this beautiful family but we can help ease the financial burden so they can focus on looking after gorgeous Avi. We are hoping to raise funds to help with her ongoing medical costs, travel and also, hopefully, have a little extra, to help make as many of those memories a reality as they can…
Bethan and Johno are so grateful for all the help they are getting from SMA Australia, Sydney Children’s Hospital and Ronald McDonald House charity that a large proportion of what gets raised will also be going to help support these organisations.
Johno and Bethan believe genetic testing for SMA should be offered to all couples planning on starting a family. Around 1 in 35 Caucasians carry this defective gene and it can be detected through a simple blood test. They want to raise awareness of the signs to look for, so new parents know what to watch out for.
SMA is actually the biggest genetic killer in infants – roughly 1 in 6000 are born with SMA. That’s a lot of babies dying, yet few people have even heard of it…
Anything you can give to help Avi and raise money for these organisations will be appreciated so very, very much. No one should have to go through what Johno, Bethan and Avi are.