Christmas Eve may seem a long way off, but I already know what my family will be doing…
Our children, Liam and Roisin, will be worrying about the fact we don’t have a chimney for Santa, but leaving him milk and biscuits anyway! Then, so they don’t burst with excitement, we’ll all settle down to share a festive story together. It means the world to me that I can still read extracts from our favourite stories - ‘The Dinosaur That Pooped Christmas’ and ‘The Tale of Peter Rabbit’.
You see, in June 2020, I was diagnosed with MND at the age of 38. I now need constant ventilation to help me breathe, and I’m unable to speak.
My diagnosis came just four years after Jenny and I had enjoyed the perfect wedding day – it was a fusion of our Irish and Chinese heritages. With the arrival of our children over the next few years, our family was complete. We had everything to look forward to. But when I experienced some muscle twitches and my right foot started to drop slightly, I knew something was wrong.
The shock of my MND diagnosis was devastating, but my practical side soon took over and I decided to bank my voice – a fantastic service funded by the MND Association. I couldn’t bear the thought that one day I wouldn’t be able to communicate with my family – and it was really important to us all that my Irish accent was captured. It’s distinctive to me, and I want my family to be able to hear my voice, filled with love for them, for many years to come.
Please will you give a gift today to help someone like me bank their voice before it’s too late?
The MND Association was a big help in getting my voice banked. They loaned me a high-quality headset and funded the voice banking process so I could start recording. For a few days I spent an hour or two saying a set list of phrases on the software programme, so my voice could be used in a speech-generating communication device.
Because of generous people like you, I can now ‘say’ an infinite number of words and sentences. I’ve even recorded my own set of personal messages, which are saved for my loved ones, forever.
"Even though MND took my voice, I can still read a festive story to my children."
Eoin, sharing a bedtime story with Roisin (aged 4) using his eye-gaze computer.
Although it’s not a perfect natural copy of my voice, it’s still recognisable to my wife and children. Knowing I can still engage with my family and friends using my unique voice means everything to me. And that includes reading stories with my children.
Since my diagnosis, I’ve written them some bedtime stories about my own childhood growing up in Ireland, and the things my wife Jenny and I did before they were born. Sometimes my son Liam will read the stories and sometimes I use saved messages to read passages from the stories too.
It’s thanks to you, and people like you, I can still talk to my children about the adventures and experiences I had before MND changed everything.
Explaining the terminal diagnosis to Liam and Roisin was something that Jenny and I were dreading. Through their partnership with Barnardo’s, the MND Association arranged for us to see a child psychologist who guided us through the best way to do this. The charity also helped by speaking with teachers at the children’s school and providing a memory box for the future. Thank you, your support has had such a positive impact on helping my family cope with the emotional upheaval this disease brings.
On a practical side, we’ve also had much-needed help covering the cost of things like car adaptations and my portable wheelchair - they even provided a head joystick so I can drive it. It’s been fantastic. But I know that, right now, there are many more people who need essential support.
A donation today could make a life-changing difference to more families like mine, by providing vital services.
As I’m sure you’ll understand, it can help to take one day at a time when you’re living with MND. But that doesn’t stop me looking forward to the night before Christmas when I can read aloud with my children, and enjoy precious moments with the magic of Christmas all around.
Wishing you a very happy festive season. And thank you for your support.
Eoin
