07/10/2026
5 years….
We are often asked where we see ourselves in 5 years and I can’t imagine my current position would have ever been the conclusion I would have got to, if I had been asked just over 5 years ago.
Back then, I had 4 beautifully healthy children and a really promising career with a super supportive husband. I was contemplating taking on my masters and trying for a trainee scientist role, marvelling at what a wonderful role model I was being for my children. A woman who can have it all!!
Little did I know that my career would suddenly feel irrelevant, along with everything I had ever thought mattered. Instead, we would be fighting to stay together as a family, wondering how we would get through each day. 🌪️🌪️
The past 5 years have been so dark and today on the 5th anniversary of Caitlin’s diagnosis, I could sit and look through old pictures and think of all the ‘could have beens’ and break my heart further, or…….
I can be thankful that despite what Caitlin’s diagnosis is burdening her with, she is still very much here.
Her humour and witt still have me in hysterics everyday!
Yes her sight has gone, but her ability to recognise when I’m trying to sneak a sweet in my mouth without sharing, is nothing short of a super power! 🦸♀️
All 4 children are thriving in their own ways,
Nick and I have fought our way back and have become stronger than ever and are beginning to find ourselves again, I have been truly blessed with being able to give my time to my home and family.
Since starting on a series of antidepressants, Caitlins mood has improved so much that she finds the courage to try new things. She recently attended a camp for the blind making lots of new friends who see the world like she does. Her plans for her future are BIG, almost as big as her determination. So much so that I have started to let myself believe that a future might be possible.
She has begun on a new medical trial which may not be a cure, but it’s hope.
I don’t care what her diagnosis reads for her, if I have learnt one thing from life, it’s that ANYTHING can happen in 5 years time, so here’s to the next 5 years and the endless possibilities. ❤️❤️❤️❤️🧡🧡🧡
Nick Passey Naomi Passey
Batten Disease Family Association
