You, Me and HD

24/09/2025

🧬💚🎉

Truly wonderful news coming from pharmaceutical company UniQure today about a new treatment that slows progression of Huntington’s disease by around 75%! This has been described as a significant breakthrough in treatment for Huntington’s disease.

https://www.hda.org.uk/news/a-positive-development-from-uniqure/

04/07/2025

Recovery takes time.

Sometimes along the way you experience more trauma.

You take steps back as you keep tip toeing forward.

Sometimes your strength becomes your weakness and you find the very people, places and things that once felt so safe to you become strangers in the mist.

You, Me and HD stands as a reminder of one of those difficult battles, since childhood. I have ever had to face. Since then it still hasn’t been easy and life has tested me in more ways than one, especially recently being diagnosed with Complex PTSD.

What cause it? A simple but also complicated answer that has reopened scars and difficult memories that were once locked tightly shut.

But one thing is for sure, this page, this community and my people keep me going. We are all facing battles in and outside the HD world, some known, some secret but we try to get to tomorrow.

I can’t even now put into words how devastating, confusing and just scary life can be.

But it’s the pull of wanting to be that person to help, support and enable someone to feel appreciated, listened to and needed that keeps me here.

We never know what tomorrow may bring and I hope that you all know just how bloody amazing and special you are. Online, offline, in person or over the phone, you are all someone’s lifeline whether you realise it or not and I especially know I wouldn’t be still here without some of you.

Thank you 💚

A special shoutout to the special ambassadors and team who have been pillars of strength to so many, especially in the last few months. You are all heroes 💕

09/06/2025

What I remember of my Great Grandad was how quiet he was - a man of very limit words and a few noises here and there.

What my Dad can remember growing up is someone very different. Someone who needed him would be so great in times of trouble, it wasn’t simply a phone call from the school to come home, it was a race. My Dad ran in fear, worrying about what condition he would find his Grandad in and if he could save him.

My Dad often missed school, left with little to no qualifications, but experienced a lot of trauma and patience from his childhood.

This was over 40 years ago.

Even now, many young children aren’t identified or supported in their caring roles. So much has changed over those years, and even with the developments of technology, it is the simple conversations that come from observing and talking to children and young people that we can start to understand their lives and circumstances.

But more needs to happen.

Last week, I gave an assembly for Careers Week at my son’s school in Wales, and the difference in support for young carers blew my mind. We live just over an hour and a half away from my hometown in England, and the access to support is just worlds apart.

I had a girl put her hand up to ask, “What do I do if I think I am a Young Carer but I don’t have access to a phone?”, in which I answered just speak to someone you trust, a family member, friend or teacher, because there is always someone out there who can help you.

But it shouldn’t be this hard to find help.

I might not have been around to make a difference for my Dad, but now I see the lasting effects of the changes his caring role had on not only his upbringing, but his education and employment opportunities. I see a father who beats himself up for ‘not being good enough’, when in my eyes he’s faced more than people will in a lifetime.

And I don’t want any child or young person who selflessly gives up their childhood every day to ever feel worthless or not have the same equal opportunities as their peers, simply for caring for the ones they love.

Equality matters, and time is of the essence.

20/05/2025

I had every intention of writing a post during Huntingtons Disease Awareness Month, but I don’t think I could write anything without acknowledging someone who we all sadly lost only a short time ago.

Liv was one of the first people to reach out when I wanted to share stories of people affected by HD on my page. She also was one of the first people to join my campaign sharing again her story and also hopes for the future whilst remanding at risk of inheriting HD.

Processing the news, I sat back and watched a community in mourning do exactly what Liv always wanted to do… bring people together and remind them they are not alone. I don’t think I could ever be more prouder and blessed to be a part of this rare family with a special mention going to who have been amazing during this difficult times for many.

So this post, my first one for HD awareness month is for Liv and forever channeling her ambition to help others and make sure everyone knows they have not only a voice but a rare family to turn to.

Liv, you will always be remembered and never forgotten. Thank you for everything you did and continue to do as we take you with us in our mission to find a cure to this disease.

Rest in peace always 💚💕

13/04/2025

Little Life Update 💚

Personal -

I am currently undergoing trauma therapy and for the first time things feel like they are shifting. I have a new found confidence for accepting and appreciating myself, all my ‘flaws’ and all my strengths my life has given me so far. Feeling so grateful for the handful of people in my life that have been patient, shown unconditional love and support whilst I am on this journey- you guys are the best! 💕

Professional -

I have returned to work and facing a number of challenges which a few years ago I would have just brushed to the side. As identified by those closest to me, working professional and my therapist, this situation isn’t something you can brush off. I owe it to myself and my family, who have taken the emotional toll too, to stand up for myself and hopefully help others seek the help they need. I love my job and everything we achieve but all because you work for a charity doesn’t mean you don’t have to deal with uncomfortable situations. Remember you have a voice and combined with a caring heart you are allowed to seek support and advocate for change. 💕

Huntington’s Journey -

Feeling very grateful that as a family we are finding a positive space of acceptance, understanding and personal boundaries of individual journeys and decisions. Looking forward to getting back involved in the community in time and updating this platform once I am feeling more like me again. 💕

Thank you for all the love, messages and words of support during this testing time - can’t wait to get back to raising awareness at the place that started it all 💚

04/02/2025

New Beginnings 🏡🔑👶🏻👦🏻🏴󠁧󠁢󠁷󠁬󠁳󠁿💕

Not sure why today I chose to post after nearly 6 months away for you all but here we are!

A lot has happened since we last spoke…

We’ve moved house, still in Wales but now in the valleys! We are a little bit more settled in, moving schools, lots of declutterjng and feeling like we now have room to breathe!

We now have a 1 year old as well as a child turning 6 but more like 16 in attitude 🤦🏻‍♀️🤣

I have take a big step in my mental health starting my EMDR journey still got a lot to work through but I am still here and looking forward to tomorrow ♥️

It’s been a bittersweet time away from social media, I have missed you all but know it’s made these last few months easier to focus, recover and reset. Can’t wait to catch up with all of you and reignite my HD advocacy flame! 🔥

TTFN 💚

17/09/2024

Remember it’s ok to not be ok. You are not defined by a single chapter in your life, the fact you are still here writing the pages proves that. Breathing comes easy, learning to live is something we can never truly master but can give it our best shot. 💚

I might take two steps forward and one step back, but I am still moving. Better days are coming. 💕

30/07/2024

Therapy 💚💕

In order for us to grow, we need to let go, relearn, embrace change and accept the inevitable.

In the last 5 years, I have suffered several intense and unplanned health scares. From being at risk of HD, a miscarriage to two major surgeries. In that time I have suffered grief too, both unexpected and anticipated.

Saying goodbye whether that is to a person, a situation or a chapter in your life is always hard even with the happiest memories, let alone the moments you never want to relive again.

This year, I have asked for help and finally put myself first. I have accepted that physically, emotionally and mentally I need support.

Why this post? Because not only is it ok to not be ok but sometimes you need to do something for you, however scary it feels.

Yes it’s intense but for all the good reasons and it might just end up being the best thing you ever did for yourself. Sending so much love to anyone in the same boat, it’s an honour sailing these waves with you💚

Thank you to everyone who has reached out and asked how I am doing, it’s a long road but one I am discovering is worth it 💕

30/06/2024

Same boy. Same beach. Still here.

For the last 5 years we’ve been coming to this place. Spending summer trying to figuring out the answers and find relaxation amongst painful challenges.

But this year it was different. In this moment, whilst taking this picture I told Rob “if I were to go right now, I can honestly say I am happy with everything I have and done.”

Happiness is such a funny feeling so many of us strive for and compare against, but the full meaning remains different to every single person. It doesn’t always come from joy, sometimes it comes from grief, but it is a reminder that there is always light at the end of the tunnel. It’s there for us to remember, this life is and forever will be worth living despite our fear of the unknown. 💚

13/05/2024

As much as this month is amazing for raising awareness, it can also be very triggering and emotionally challenging.

I wrote this poem 4 years ago after talking with Ashley spoke about our testing journeys. One thing that stood out for us, was the message that this is a personal decision and one no one can make it for you. But please remember always, what ever happens you are more than someone affected by a rare disease. You are you. Nothing and no one can take that away from you 💚

13/05/2024

Charlie Burke’s family was entirely unaware Huntington’s existed until her nan went for a routine doctor visit. Now it’s an ever-present force in their lives. https://buff.ly/4agGLcJ

03/05/2024

Spending a few much needed days with my Dad this week.

So things have been quiet on here and that’s because unfortunately my Dad hasn’t been very well.

Anyone who knows me will know I am a Daddy’s girl and it was a shock to find out that whilst I myself was having major surgery giving birth to Ieuan, my Dad found out he had skin cancer and needed urgent surgery.

We are still waiting for biopsy results and recently he also had to have major surgery on top of this.

Many will know when I had my first son, my Dad found out only a few days before he tested gene positive. Cian’s birth also was very traumatic and my parents made the decision to not tell me until a few months after. So to hear my Dad’s cancer news resurfaced a lot of past trauma and panic that I needed to process and accept.

Acceptance when it comes to our own and our family’s health can be very difficult, especially a diagnosis. There is never a set time or date you have to recover from that news and move on.

Like grief, it will hit you at very different and sometimes random moments and putting yourself first and being kind is key.

I wanted to post this not to explain but to highlight that life happens and often we can feel we need to put on a brave face. That isn’t always possible but what’s important is knowing in the darkest of moments, you are never truly alone.

Thanks for sticking around and as always for the love and support. Feels so good to be back 🫶🏻💚💕