Come with me to Orlando!
Growing up I always dreamt of going to America, but due to my condition always thought it was impossible. That was until UCFB’s global...
SMA UK - Resonate 2023
Hi everyone, Hope you’re all well! A little over a week ago I spent a long weekend at the Calvert Trust in Exmoor with my PA Mechelle for...
Vaccine call up
Hi everyone, I hope you are all well and keeping safe. Sorry I haven’t written a post in a while, there simply hasn’t been anything...
A taste of freedom
Hi everybody, hope you are all doing okay in this strange time. I apologise for not keeping on top of my updates, due to Covid-19 we have...
Mental Health Week and COVID-19
Hi everyone, hope you are all well in these difficult times. With it being Mental Health Awareness Week (18th-24th of May), I thought...
Rare Disease Awareness Day 2020
Hi everyone, Hope you are all well. Today (Saturday 29th of February 2020) is Rare Disease Awareness Day. To help raise some more...
Travelling abroad with a wheelchair
Hi Everyone, Hope your all well I recently went on holiday to Portugal with my family, I'm going to be talking about how we got on in...
Spinraza
Hi everyone, Hope your all well So today after many years of research the SMA community hit a huge milestone. In December 2016, Spinraza...
My feeding tube journey
Hello everyone, Hope your all well It was Feeding tube awareness week on February 4th - 8th 2019, to help spread awareness I am going to...
My Experience of getting a Button
Hello hope you are all well, On Wednesday 19th of April 2016 I went to hospital to get my button put in. In the morning I just chilled...
