Walking group.

Every sundays for about 5 years i attend a walking group for people with disabilities.

Achillies Sydney is a wonderful group wich started for blind people but now accepts other disabilities. People can run and walk at own pace. I walk with my walker and each week i do better than the last.

There are volanteer guides that help people to achieve their goals. For me my goal is to one day be able to walk most of the time with out needing my chair.

We participate in events like the city to surf and blackmores running festival.

I enjoy this and have made lots of friends. Walking sometimes helps to keep my gut moving.

I walk for about an hour every week from the art gallery towards the opera house and through the botanical gardens. Last Sunday I walked the whole way without sitting down.

CHARGE GUT and feeding

Another hidden part of CHARGE SYNDROME is stomach and bowel problems. I have these constantly. Often I vomit or reflux and I have severe pain wich no one knows why.

Lots of CHARGE people have feeding troubles and need a feeding tube. Some even need IV nutrition, wich i needed for 5 years.

Some need many surgeries and tests. I myself have had 2 thirds removed and a loop of bowel. I also had my gall bladder out.

It fustrates me to be in pain daily and I often want to scream at people to fix me.

Drs believe the vagas nerve plays a roll in alot of stomach problems. When they can fix that then we will know how to fix me.