Day 7 - Marking my independence

"It may get the upper hand now and again but we will win"

Back in 2014 I first introduced myself to everyone at PINNT. I have now had my gastrostomy for eleven years, just had another anniversary on the 4th of July.

It’s my independence back! Since then I have been all over including another trip to Florida. We still look at the PINNT holiday booklet and travel information to check we have everything in place. This time in Florida, I went on all the rollercoasters - I was scared last time that the bar would hit my button, but thankfully it did not happen. I did everything that my family did.

I have been dry hill skiing and did better than my sister! I have just finished college and I am now just waiting on the results. I got the award for Law at College. They were very supportive of me and my conditions. I was able to signpost them to PINNT for any additional help mum and I could not provide. I am looking at going to University in September. This will be my first time living on my own which is scary, but I know I will be fine. I am in touch with the University Student support and they are more than happy to help support me.

I have transitioned from paediatrics to adult services which has not been as smooth as it could have been. I now volunteer with my mum at the hospital and I have been able to give feedback and help with putting a better transitional process in place.

My only bugbear with the feed is the back packs just being in grey. I am not a grey girl, I need colour!

I try to do as much as I can and enjoy myself. As mum has said to me for years,

"We rule the disease, it does not rule us! It may get the upper hand now and again but we will win!"


HAN Week