Caring for Coco

My name is Coco-Maria. I'm 20 months old and live in a rental in Kingsland with my Mum Jo, Dad Kim and half-brother Hemi.

I love music, my pet cat Stevie Nicks, balloons, shiny things, vegetables, nature, water and cuddles.

When I was just over a year old I was diagnosed with Angelman Syndrome. With my Dad not working as many hours as he needs to because of my needs and specialist appointments and my Mum, who has a degenterive back condition, caring for me full time, everything I need to grow and learn happily has become unaffordable for my parents.

Angelman Syndrome is a genetic condition which means I am missing a small part of the maternal 15th chromosome and so I develop and communicate differently to others.

It will take me a long time to learn to stand independently and learn to walk on my own and although I am very vocal it is highly unlikely I will be able to communicate verbally. I love to laugh, I have the happiest demeanour and give the best cuddles. I am so social and so excited to go to kindergarten as soon as possible. I am also totally, like, dangerously obsessed with water, and I DO NOT LIKE TO SLEEP MUCH! (My poor exhausted parents).

Unfortunately, although I am a total blast to hang out with, I can be a real handful and I will need life long around-the-clock supervision. My parents have found me a really awesome part time carer which the MOH contributes to, however we are almost running out of funds to keep her onboard because of the amount of time I need to be supervised. My Mum struggles because of her back and needs time to be able to attend her own therapies.

Because my disability is physical and intellectual and also a sensory processing disorder it is so important for me to continue with and begin new specialised therapies. Most kids with AS have really bad seizures, which I was showing signs of before my parents and naturopath put me on a range of gut health supplements and nutrients and a specialised diet of lots of healthy omega 3 fats, and organic vegetables. I really hope this will keep the seizures at bay and I won't have to go on yucky medication.

For more information about Angelman Syndrome go to this website:

Www.cureangelman.org/understanding-Angelman/