In 2017, after many years of trying for a baby, our beloved daughter Veryan was born and we were living in bliss. I had worked really hard to forge a career in education and was working as a Deputy Principal at the time. We had bought a new home and it seemed like we both had everything we’d ever wanted. We had no idea that a  short time later our lives would be shattered and our future together destroyed. 

I was diagnosed with MND when Veryan was one. We never walked hand in hand because just as she was learning to walk, I was losing the ability. MND has now taken every movement from me and the only way that I can communicate is through my eyes. Despite how much I suffer, the greatest loss is Veryan’s. My darling girl will lose her Mum and there’s nothing that I can do. I can’t fix this. I won’t be there to make it ok. 

MND is a brutal and disgusting disease. Despite all of the hardships and everything that she misses out on, the suffering that she sees and the compromises she has to make, Veryan makes the best of everything. What  an incredible little girl. I can only hope that one day her amazing bravery, resilience and strength will  be a comfort to her and she is able to see just how well she faced living with MND. 

What hurts the most is not the life I will lose, it’s the love that Veryan will lose. It’s unbearably hard to think of her suffering when all I want to do is to keep her safe forever. I am so very grateful that you are all coming together to support Veryan. My little girl deserves every happiness and this incredible fundraiser will give her more opportunity, more chance and more wonderful experiences in life. Thank you. 

When I was diagnosed my neurologist told me that we would have a successful treatment for MND within 15 years; I told him he had 5! MND has to be stopped. The money raised will take us closer to finding a successful treatment for MND. When the news comes, know that you have been a part of it and be proud. 

Thank you all for coming together to support us. MND has taken almost everything from us and your support means so much. We are so grateful to be part of such an incredible community of good, kind people. I can’t wait to spend the evening with you all and I insist that you all have a glass and a dance for me!