Amazing Maisie’s Mission was set up by Laura and Chris after their daughter, Maisie, was diagnosed with LMNA-related muscular dystrophy in December 2025. Her family want to raise awareness of LMNA and fundraise for research into this especially rare form of muscular dystrophy.
Amazing Maisie's Mission
There were no signs that anything was wrong when Maisie was a baby. She hit every milestone, even walked before she turned one, and was full of energy and confidence just like any other girl her age.
It wasn’t until just before her second birthday that we noticed small changes in the way she stood up and walked. We thought it might just be a wee phase she’d grow out of at first, but we soon found out that wasn’t the case.
The rollercoaster from those first worries to hearing the words “LMNA muscular dystrophy” was overwhelming, anxiety-provoking and devastating. After months of appointments, tests and waiting, Maisie was diagnosed with a rare LMNA-related muscular dystrophy. Because it’s so rare, there are still many unknowns. We don’t know exactly what the future looks like, and that uncertainty can be frightening.
But Maisie is thriving right now. At the wee age or four she’s fiercely independent, full of personality and doing brilliantly at preschool. She works so hard in physiotherapy, and every day she shows us her determination and strength.
Along the way, I found comfort and hope through Muscular Dystrophy UK: reading other families’ stories and realising we weren’t alone. I also became aware that rare conditions like LMNA don’t always get the same level of attention or research. That’s why we’ve chosen to set up a Family Fund. It’s about hope for us. Hope that more research can be funded, progress can be made, and one day there will be treatments for children like Maisie. If this Family Fund helps bring us even a tiny step closer to that, then it’s worth it.
When Maisie’s older, we want to be able to say to her that we did everything we could to fight for her.
