I’ve not been very active,

sorry! Life just gets in the way sometimes, as everyone knows. Feeling a bit tired but quite excited for Christmas now it’s here, we get to tell my partners little one that she is going to be a big sister! That’s super exciting, she’s been starting to pick up on me feeling unwell and asking why my trousers hurt my tummy so it is really nice to finally be able to get her involved in everything.

Baby moved yesterday for the first time and oh my word did it make me feel light headed. I can’t be the only person to experience feeling so faint after the first time, surely? Every symptom you could possibly have through pregnancy – I’ve managed to suffer with. Sickness, nausea, eczema.. you name it! Thank God everything is starting to clear up now! Hoping I’ll be human again after 20 weeks! Waiting for a letter for a Heart Echo to check my heart operation from waaaay back is all good to go and won’t cause an issue – shouldn’t do, they’re just ticking all the boxes. They want me to go for another Genetic Counselling session with another neurologist about my HD to double check I know the risks of not testing the foetus etc. but I saw my neurologist when I turned about 8 weeks pregnant, and went through it all with him, he did a few motor skill and memory tests to make sure I was 100% and talked me through the testing and we decided together not to have the baby tested, so I don’t really want to go through all that rubbish again with a neurologist who doesn’t know me or my history etc, if I had any issues I could call mine! So I doubt very much I will be attending that meeting. I’m very certain we don’t need the test, like I said in my previous post, I have no intention of aborting the baby if it came back gene positive and I am hopeful enough science will have a miracle by the time me and my baby need it!

Does anyone else feel this away about having the baby tested? Or do you all feel like you would want to know? Opinions would be great!

Hope everyone is well and I hope everyone has a fabulous Christmas, all my love xoxo


i’m having a baby!


Due 25/05/18, two days before my 24th birthday! I find out the sex mid-January. I can’t find the words to describe how excited I am. I have made the decision to not have the baby tested and to allow him to make it’s own decision when old enough to do so. I won’t hide anything about Huntington’s Disease from this child, I will be open and honest from the moment he is old enough to understand.  My mother is 62 in March’18 and although hasn’t started showing symptoms yet, will more than likely begin to be symptomatic throughout babies childhood, and I’ll have to explain what is wrong with Nan anyway, but I don’t want HD to be brushed under the carpet anymore – no one in my family, except me, speaks about it. It is still so taboo and I want to help break that by teaching my child as soon as I can. I have enough faith in Science and Medicine to trust and believe that by the time I even begin to develop symptoms there will more breakthroughs in treatment, let alone IF my child begins too.

Anyway, sort of depressing HD stuff out the way – I’m having a baby and I am super excited!

“life interrupted”

My current book obsession, I absolutely love this book, people might ask “why read pretty much into what the future holds for you?” Why not? I am going to have to deal with it eventually, why not grab some first hand experience early on? 

I should probably be scared. I’m not. I’m pretty nonreactive about the diagnosis itself but it has made me more self aware. I pay attention to my moods, I take a deeper breath before I let something annoy me. I live better now. I make better choices. I’m excited to try and help people, because that’s what I get to do now that they’ve diagnosed me. My family history with the disease allowed my Dr to enter me straight into research programmes to allow them to use me/my blood/my MRI’s in research… I’m not sad about any of it.