Last year my tummy Dr wanted me to see a neurologist to investigate autonomic nerve problems with my gut. Most people with CHARGE have some type of autonomic nerve disfunctio.

While these settled after my surgerythey thought a baseline was worthwhile especially since I don’t cope well in the heat.

The Dr believes i do have something and has referred me for tests.


Well after two years of trying hard to avoid it I got COVID. I did everything right. I hand washed, sanitised , social distanced and wore a mask where an when ever possible. I also am triple vaccinated.

I was having pain around my tube. It was very hard and lumpy, the bubble was going and I was leaking. I also had dioreah but this is normal when I have my medicine to help me poo. I had been in respite for 11 nights and we did no outings and the only people that came in were our Lifeskills people and the staff.

I went to the hospital for my tummy they found I had a temperature but believed it was an infection. A routine test came back positive for COVID. my gi team were worried about the effects on me.

I was in the COVID ward for 4 days and I did well. I did have to isolate for 2 weeks from Lifeskills but I was ok. I consider my self lucky to have only had a mild case and that no one else around me got it.

I did end up needing my gj tube replaced a week earlier than planned but now I am doing good again. My gi Drs say they can’t say I would of done so well if I had got the earlier strains but we are all very happy.