Amber is 6 years old and loves singing and dancing. She also has a rare form of Leukodystrophy. Yvette, a volunteer with Very Special Kids, comes to play with Amber, and offers invaluable support for Amber’s mum Jenny.
Six-year old Amber definitely gets her point across. She uses a special communication book and is at the ‘why’ stage, asking questions like why can’t I walk, or why am I in pain? She’s clever and understands everything that’s going on around her; she just can’t speak.
Amber has a rare form of Leukodystrophy. There are less than 100 cases in the world, and she’s the only one in Australia. Thank heavens for social media as it allows me to keep in contact with the other families overseas.
I was invited to give a talk at Very Special Kids about what it is like to have a child with a life limiting condition. That’s when I met Yvette, a trained volunteer with Very Special Kids.
It’s nice for Amber to do things with Yvette. Yvette and Amber go for walks, read books and do crafty things. Yvette takes her to dance classes, which means that I can do something else, or I can be there like any other mummy and watch my kid dance. It allows me to have a different experience, to be a mum, rather than a carer or a nurse. Sometimes I just want a break. Volunteers like Yvette make a big difference for us.
Amber’s vision is going, so I’m giving her as many experiences as possible. I go a bit crazy with things like birthdays. We have huge parties and invite all of Amber’s class and most of them will turn up. As her vision gets worse, it will be something special that she can remember.
I’ve had a bit of a reality check in the last 12 months. Amber hasn’t been super sick, but her pain is becoming an issue and her medications are not working as well. When two kids overseas with Amber’s condition died recently, it made me realize there is no magic cure as yet.
People don’t like it if I talk about death, but I need to accept that this is a potential future. But that doesn’t mean we stop living.
Amber loves doing things just like any other kid. She loves singing and dancing in her own way. I love how she will give anything a try so I’ve got no excuse.
The first day Jenny’s mum had organised a princess theme for us as a way to get to know one another. We started off reading princess books but it quickly turned to farts! Amber loves anything to do with the body and body fluids, and she finds farts hilarious. So then we played ‘Gas Off’. Jenny got the game to help Amber with counting, but you can’t get Amber to stop laughing enough to count! So time blew by pretty quickly.
Amber loves books. I’m always reading them to her. She doesn’t like the really girly- girly ones, she likes the Princess Smartypants, dragons and pirates. There is a fun book with girl pirates we read often. One of the joys is seeing Amber’s luminous smiles.