The impact that Grace's diagnosis had on the family was immense, not least for Fleur, her younger sister. For siblings the news can be a double blow that affects their brother or sister - their best friend. Fleur describes her heartfelt reaction to the news.
“I remember this day like it was three seconds, and not three years ago. My sister had been experiencing (and for the most part, ignoring) symptoms for quite a while; she lost the motor skills in her hand and could no longer write properly, and her arm kept twitching, amongst other things.
"She had a scan on her shoulder and then later on, a brain scan. I hadn't been worried about it, not at all. I just thought they wanted to rule any brain problems out, and that it was probably just a trapped nerve or something.
"Then this day came. I remember what I was doing so clearly. I had a friend, Heather, over for a sleepover, and we were chatting in the kitchen and making lunch and giggling. Everyone else was out apart from mum, and she was upstairs doing something on the computer.
"I can picture the scene I walked into in my head, again, like it was only a few seconds ago. I stepped into the study, and my breath caught in my throat. My mum was sitting on the chair in the study, looking out the window, in floods of tears- actually visibly sobbing, clutching the home phone in her hand. I can't really tell you what thoughts went through my mind at that moment in time. I just stayed still.
"After a brief pause, I asked what was happening. She stumbled over her words, somewhat. “They, um, found s-s-something on Grace's brain scan...
"My first thought was, no. Plain and simple. My mind rejected what had just happened. I felt like I was in a dream or some sort of alternate reality. These kinds of things only ever happened in movies or to other people. I couldn't believe it was happening to us. Her.
"If someone went into my mind and picked out my very worst nightmare, this would pretty much be it.
"Throughout my entire life she has been the one person that has always meant the most to me, (and always will be). She's guided me through countless falling-outs with friends, arguments with the parents, awful style choices- whatever the situation, I have always known that I have her and never ever felt alone in anything."
"However, my reaction did not at all match the gravity of the situation. If you know me nowadays, this will sound very familiar, as this is my reaction to pretty much everything/my strategy for dealing with difficult things now. I completely shut down.
"The first thing I said was: “I guess we'll have to take Heather home then. I'll go tell her." Yep. As you can see, I shut it all out. There were no tears, no emotions on my face. I was in robot-mode, almost. This was difficult though, as I hadn't even had five minutes to process this new life-changing information I had been given before I had to go and explain it to somebody else. It was important to me not to just make up some excuse or lie though, I had to be straight up and tell her what was actually going on. So I did. I was very poker-faced about it, still not letting any feelings in. Which I suppose did kind of help me at this particular point.
"She was really understanding, of course. Very shocked, and very sympathetic. We drove her home, and the three of us barely spoke. There was a weird feeling hanging in the air, I suppose of us digesting the news we'd just been given.
"After we dropped her off, I put music on in the car for me and mum to listen to. We still didn't speak. At one point, we were both dramatically singing along to 'Let It Go' from Frozen.
"And then when it finished we both started to cry. So some emotion did come out at times, but it is rare for me now."
Diagnosis is so tough for everyone involved but often the siblings' experiences don't get voiced. We're extremely grateful to Fleur and all the Latter family for sharing this experience with us. Read more of Fleur's writing about Grace's diagnosis.
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