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Getting ready for an "ACE" time in India

by Aled Griffiths

Hi guys it's me Aled, welcome to my first ever blog. I was born with VACTERL Association, a collection of birth defects which included an imperforate anus (meaning the anal opening wasn’t properly formed), a neuropathic bladder and limb abnormalities. But rather than talk about that, I thought I would start with a little bit of a story about how I prepared for a recent visit to India.

Back in March 2016 I was asked to apply for a Virgin Atlantic scholarship trip to India with the Me to We charity. They had seen me do my presentation at a 'Diana Award Inspire Day' so they thought that I might like to apply. At first I was unsure as to whether I should, but I thought "why not, what have I got to lose"?

To help mum understand whether the trip would be suitable for me she phoned the office in Canada to speak to the organisers. She explained about my Ace and Mitrofanoff as well as my other medical needs and the organisers explained that they had dealt with disabled participants previously so weren't concerned with anything. That conversation helped my mum and dad to come to the decision that I would be okay to go, if I wanted to.

With help from Mum and Dad we put together the application and sent it off.

At the end of April, I came home from school and within ten minutes I received a phone call telling me that I was one of the lucky 30 people chosen to go to Rajasthan.

Now, at this point I started to celebrate but my mum and dad started to panic...."How will he cope, what about his catheters and other medical equipment?" If I am honest I left them to do the worrying because they knew what I needed and I had much better things to do such as playing on my Xbox.

What I can tell you is that my equipment did need a good bit of organising. I was going for three weeks so I needed:
1. Over 140 catheters both for my ACE and Mitrofanoff, plus the "giving" set for my ACE,
2. Four bottles of sterile water for my Mitrofanoff flush.
3. Hand sanitiser.
4. Syringes.
5. Plus all my medication (approx. 200 tablets, 40 sachets of powered medication and 125mls of liquid medication).

At that point my mum realised that I needed extra "carry on" luggage, so she started to organise that. First of all she phoned Virgin Atlantic who were really good and gave me an extra bag allowance, but Air India were different. A week before the flight they decided that I needed a Fit to Fly certificate signed by our GP. Not so easy to do when your GP is part time....mum sorted it though and managed to get it back to Air India just in time, who in turn gave me an extra allowance.

Mum and I then spoke with 2 of the facilitators who were going with us, we explained that I had to catheterise and how I did my bowel washouts, they seemed happy with everything and said that they would help me whenever I needed it, these words helped to ease mum's worries.

The few days before the trip I was a little bit nervous but it really hit me on the 4th August when we were on our way to the airport, I felt really nervous. How was I going to look after myself, would I manage? I was really anxious about meeting the others I wondered what they would be like as we had never met each other. We met up with everyone at the airport, including 2 of the 4 facilitators, the other 2 were already in India, everyone seemed quite nice.

When the time came to say goodbye I tried to put on a brave face because I didn't want mum and dad to see me upset, as they would then be upset which in turn would have all of us blubbering. So after we all said our goodbyes we left our parents and headed for the departure lounge, I didn't look back at my parents as I knew that would be enough to start me crying.

Going through security was easy, no strange questions or daft looks (from what I could see anyway) just straight through and into the lounge. That was it for a couple of hours, before I boarded the plane, and off I went, next stop Delhi.

In my next blog I will tell you how I got on with my Ace and Mitrofanoff during my trip to India.

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