A year in review

We are almost at the end of another year. This year has been different to other years for most but for me you could say it mirrored times when I was much younger.

When I was little I spent many months in hospital with my gut. We had to be careful as any illness could have an impact on my stomach.

So this year for many like me was quite normal but for others it wasn’t.

This year I missed out on lots of things but I was able to keep doing my Lifeskills programmes even during the lock down. I was able to enjoy respite with friends and go on outings with my carers.

I didn’t have a great year with my health but I have so far avoided COVID so for that I am happy. I am also stable for now.

I have not been able to go to my CHARGE conference this year but we did have an online catch up that was good fun.

COVID changed lots of things but it made people change the way they do things. Some of these changes were for the better but some changes made things harder. I had trouble with telehealth with my hearing and my Drs had to do face to face so this was hard in the beginning. My NDIS meeting was done via video conference which didn’t work. When technology doesn’t work it can be hard to do things.

Even though I couldn’t do many things I was at least able to do. Next year will hopefully be much better for everyone because I always believe everyone will have good days and bad days.

The value of the CHARGE community

This year the CHARGE syndrome association is taking a moment to reflect on the last 30 or more years association. It was founded in 1988 by a group of families including mine. We had our first conference in 1994.

Over the years we have supported many families in Australia,NewZealand and south east Asia with recourses and support.

To me being part of the community is an amazing feeling. In our community every one gets your situation and is very supportive. We are like a big family. Every meet up or conference is like a big reunion. We share in the highs and lows. We volunteer our time in different committees.

For me I love being w part of the CHARGE family. I have loved watching it grow from just a few families to the wonderful community we are today. Now every thing is online it is much easier to keep in contact which has been great in the time of COVID. we were able to have video meet ups where even regional families that may not attend our local meet ups can attend. We gave been able to develop and take an amazing online course all about CHARGE syndrome. We have also had support from the worlds top experts and to this day are still learning.

Thanks to all who have got us to where we are today. You are all appreciated and loved very much