My name is Faye Wylie, I have a Mitochondrial condition called Leigh syndrome, which affects my speech, eyesight and causes hand dystonia (which makes my motor co-ordination difficult).
I also have my own opinions, have a vision and want to make a noise! And not just for me…
Mitochondrial diseases are degenerative and often fatal… they tend to affect young children in the worst possible way. After being diagnosed with Leigh syndrome (which my baby brother died of too) I felt isolated. There was little support out there and what was there was often unsuitable – so I decided to set up my own support organisation.
In 2010, Leigh Network was founded, since we have held annual meetings across the UK and brought together many, many families on the mitochondrial journey.
I’m really proud of the work that we’ve done – but there’s more to do. To be able to help more people in more ways I’ve studied counselling skills – finding the only barrier to furthering this was my speech.
A huge part of my work with the Leigh Network is raising public awareness, this involves interacting with the public and answering their questions. My speech has always dented my confidence – being continuously asked to repeat yourself is exhausting especially when you are low on energy as it is! Usually when people I don’t know would ask me a question, I’d refer them onto my mum to speak to them and put my thoughts and views forward.
After discussing with my speech therapist the impact the lack of confidence was having, and the importance of getting information across, she put me in touch with the Ace Centre.
Having been told in the past that I’m ‘too difficult a case’ and ‘beyond help’ – I wasn’t sure what could be done. I think I set them a challenge! What could and would they do to accommodate me – a visually impaired woman with poor speech and hand dystonia.
After an initial assessment visit the team returned a couple of months later – they had created a tablet using grid 3, with 2 different voices to differentiate between selected items. A single finger drag to ‘choose’ makes it much easier than other devices I’d tried, especially with the key guard that ensures I don’t slip onto the next line.
A bit of practice at home and I was ready to use it out in the public quite soon. After preparing some mitochondrial disease facts, I took the machine to a Leigh Network coffee morning I had arranged locally. Halfway through the meeting I pressed the button… and was delighted as the voice rang out loud and clear – the applause afterwards was such a confidence boost. Thank you AAC! Now I can really shout about the support the Leigh Network gives!
To learn more about the work of Leigh Network and mitochondrial disease, email me on Leighnetwork@hotmail.co.uk; If you’d like to support us then join us on Friday 16th August at the Willows pub Saughall Massey Ch49 4LA for an evening of fun as we host an awesome race night with truly extraordinary raffle prizes,such as an overnight stay at L1 Hilton hotel,meals out, luxury Ringtons hamper to name but a few.
Will you help us make a difference in more people’s lives by sharing your Ace story? Find out more about how you can share your experiences by downloading our case study information flyer.