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  • maryepritchard

It was an amazing opportunity experience what my daughter faces day to day

Brett, NSW, 24 hours speechless

How has your life been touched by Rett Syndrome?

My beautiful daughter Holly was diagnosed 5 years ago with Rett Syndrome, it's one of the hardest things to deal with for our family but also one of the most rewarding.

We have one of the most amazing little girls in the world and she brings us so much joy and happiness every day. We have met some amazing people on this journey and become friends with the most beautiful people like Wendy Gold who is trying very hard to find a cure for our children.

Why did you decide to take on the speechless challenge?

I have never experienced having Rett Syndrome, so I thought this challenge was an amazing opportunity to experience what it would be like for me to be in Holly's mind for a day. Next year I'm going to do the challenge again but restrict my body so that I can also experience the physical challenges that Holly faces day to day.

What was the hardest part of it for you?

The hardest part was trying to communicate with my wife about some important issues with a development we are trying to get completed with NDIS funds. In the end we gave up and decided to talk the following day, because the communication was going nowhere. Unfortunately the people with Rett Syndrome don’t that that luxury, so it really did sink in the following day when I was able to speak freely.

Was any part of it easier that you thought it would be?

I actually got a lot of relaxation from the experience, I am a very chatty person so being quiet for a day and not using my vocal chords was very interesting. I actually felt very calm because I had no vibrations through my head from speaking. No wonder Monks practice this habit of not speaking to long periods of time.

What did you learn about Rett Syndrome through this experience?

I learnt that not being able to quickly explain something is very frustrating. Using Holly's Eye-Gaze speech device I I was able to get my point across to my wife, but it was very slow and it made me understand how Holly would feel when she was trying to ask for something.

Any advice for someone considering taking on a speechless challenge?

Wear the T-shirt and let people know in advance that you are taking the challenge. It was impossible to explain to my neighbours that I wasn’t talking for 24 hours

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