Making memories for our young family as we live with Motor Neurone & Fabry's Disease

Voice banking our journey

February 26th, 2017

After diagnosis in August 2013 we found information out at an alarming pace, well Liz did actually.  One thing in particular stood out, 9 out of 10 suffers will loose their voice.  That I can tell you hits rather hard.  About this time Liz found an article about the speak unique project at the Anne Rowling clinic in Edinburgh , a centre set up by author JK Rowling which is part funded by the mnda.

A tweet started it all; Liz sent a message enquiring about the project.  Soon I was talking to them on the phone.  They had one simple question, what do you hope to gain?  My reply was fairly simple and in Yorkshire terms, bartering.  I give you my donor voice and you give me a computer version of my voice that’s repaired.  Surprisingly they agreed on the basis we travelled to Edinburgh, but there were no guarantees.

We managed to get Lilly and Poppy looked after and planned for a long day.  We set off early with an ill Liz; she wasn’t going to miss out.  I drove all the way which was a large achievement in a manual car.  It was great to get there, not knowing what to expect.  We had a chat with Phillipa the speech and language therapist; she explained the state of play regards getting a voice. She demonstrated a few before and after voices, it was amazing, clarification was given all the way that it was a research project and only in Scotland at the moment.

I agreed and began the recording process, 400 phrases and sentences was the aim but less would be ok.  I have to say it was harder than I imagined, the further I got the more breaks I had, the more water I drank.  I was determined to aim high for the best result; I made it some 2 and half hours later. We were told we should have a sound bite in a month or so.  That was it, dinner and home it was. Shortly after donating my voice the hull daily mail ran a front page article on it.  The result of this was our first BBC breakfast interview, this also went national

Months had passed and we heard nothing, I emailed around November time 2015 and was told they were finishing Scotland hopefully by February 2016 and they would then be able to look at my voice.  Months passed again, they could start my voice however all their donors were Scottish.  I suggested could I get the donors?  Yes I could, so to face book it was.  The first few were friends so that was fairly easy.  My old school advertised on their website. this raised a good few more of the 20 donors needed.  We turned to radio which got the attention of the clinic; they didn’t want any advertising as the project was to be officially launched in England on 23rd June 2016, after that we could advertise.  During the waiting period a friend got in touch about his regiment doing it, this would complete the donors.  Unfortunately due to the logistics of it, it never happened.  Then Humberside fire and rescue literally saved the day by volunteering 5 firemen to go and donate their voices.

Our local look north journalist got in touch about doing a mini documentary for inside out.  We agreed to let them tell the story.  Mean while BBC breakfast wanted to run a story update, we left this to inside out to sort out.

The firemen did their bit and soon we had word from Edinburgh that my voice was ready, after 21 donors were used, a speech I did six years ago and a lot of technician’s time, we were ready to go.

A date of 15th December was set, my birthday.  As you can see from my reaction on inside out I was genuinely surprised at the likeness to my original voice.

So you can see the end result on either video below.

Thank You to The Anne Rowling clinic in Edinburgh for making it possible for me to have my own voice.

Equally I would like to say a massive thank you to everyone who made the trip to Edinburgh to donate their voices to help me.

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