Updated: Mar 24, 2022
Tonight i have another story to share with you, and i honestly don't know how to introduce it. Charlotte is a beautiful young girl inside and out! She is selfless, kind, caring and an amazing advocate for Huntington's Disease. I am honoured to call her a friend and delighted that in the darkness of Huntington's i have met her!
Please enjoy reading Charlotte's story, grab a box of tissues, because it is just beautiful and moving.
Charlotte, your mum and Nan are so lucky to have you, such a beautiful daughter and granddaughter and i am sure they are so proud of you, because after reading this story, you are an inspiration to the rest of us, and the young generation affected by HD.
Hi, my names Charlotte and I’m 24 years old from the North East of England. Thank you so much for choosing to read my story, it means so much to me. A big thank you to Ashley for sharing it on her amazing blog.
Huntington’s Disease has been a huge part of my life ever since I can remember and I have been a carer since I was about 13. My nana is in the later stages of the disease and my mum has been symptomatic for around 10 years now, in the early - middle stages.
My Nan became unwell when I was in secondary school after losing her mum, we found out HD was in the family following her passing. I remember so vividly being told that mum and nana were going to get poorly, I was 11. A few years later my parents explained there was a chance my sister and I could become poorly too. Our family have never hidden the reality of HD from us but I’m grateful for that because it taught me a lot and helped me process the disease.
As I grew up, both of their symptoms started to show, both in varying severity. My Nana’s mobility, speech and organisation deteriorated, I quickly became her carer, visiting her after school to make her meals, cleaning her assisted living apartment and just keeping her company. I’ll never forget taking her shopping with her walking aid and a man said ‘it’s disgraceful she is that drunk in public, in broad daylight and out with her granddaughter’. This is a common reality for patients with HD but I think it was the first time I realised some people’s ignorance of this devastating condition. My nanas ticks, walking and speech were obviously getting much worse but as a 15-year-old, I found that really hard to process. I can still see her face now, absolutely mortified that’s how she had been perceived. I remember telling him she had a terminal illness, he apologised but it’s always stuck with me. My Nan is now in a nursing home in the latter stages of the condition, she’s unable to communicate unless by touch, is fed through a peg and is bed bound. Despite her not being able to talk, our relationship means we’re pretty much telepathic and I feel so lucky to be so close to her. She is absolutely INCREDIBLE though, still laughs at my terrible jokes and is grateful for anybody’s company.
I work Monday - Friday in a Human Resources role and I also now work part-time at my nanas nursing home. When visiting stopped due to COVID, the only way in was for staff so I applied for a job working weekends as a carer. I’m so incredibly grateful I get the opportunity to see her, in such a late stage of the disease time with her is so precious. When I go in after I’ve finished my shift, she will often put her arms around me and won’t let go, one of the other carers captured this at the weekend and I’m so grateful. She’s been doing it for a few weeks now and the first time she did it I cried. Anybody who understands the disease will know it’s difficult for patients to control their movements enough to put their arm around somebody.
My mum's symptoms presented initially in a more behavioural and psychological way. We’ve learnt to understand her actions sometimes are not her but rather the disease, being there for her is far more important than blaming her for actions that she sometimes maybe cannot control. Her movements and balance have become much worse, she’s prone to falls and has been in and out of the hospital with injuries due to falls over the past 3-4 years. I often cook, clean and do the shopping when my dads working or taking some time out for his own mental health. Caring for her means so much to me though, I feel in such a place of privilege to be making memories with such a special lady I get to call my mum.
I never told many people about the condition, even my friends, but as I’ve grown up I’ve come to the realisation I cannot control HD but I can control how I react to our situation. Raising awareness has become so important to me, improving people’s understanding can only be a positive thing. I’ve started to share my story with family and friends and it’s working! I’ve received messages from people thanking me for sharing, explaining they knew nothing of the disease but they now felt educated after reading about our lives. I’ve raised thousands for the HDA, doing crazy stuff like jumping out of aeroplanes and running half marathons. I feel such a sense of pride, knowing it’s for mum and Nan too.
People often say to me ‘is it not terrifying knowing you may have the condition?’ I can’t lie, I have had days it does, days where I feel overwhelmed by the thought of it. I started the genetic counselling process when I was 18, decided against it and again in 2018 (21). My genetic counsellor is the same lady who diagnosed my Mum and Nan, she’s always so welcoming and puts me at ease with any questions I have. My focus at the moment is on them, I will find out one day in the future, probably the next few years but if I spend my life fearing what’s to come, I will never enjoy the now. If the outcome of the test was positive, I want to be able to say I’ve lived my life to the full, rather than spending every day letting the fear consume me.
I’m very close to my younger sister too who approaches dealing with the disease a little differently to me (which I completely respect), she doesn’t talk too much about it. My mum and i always talk about how amazing two negative tests would be but whatever life throws at us, we will deal with it as a family unit.
Huntington’s Disease is an awful, heartbreaking condition and some days it presents immense challenges, but there is so much good in our lives to celebrate! We pray every day for a breakthrough in research for a cure and treatment. My family is incredible and I’m so lucky to be able to make memories with them. There’s so much of the world I cannot wait to see, so many goals I still have to achieve and HD will not get in the way of that anytime soon. Making a positive impact through awareness, fundraising and being kind is a mission of mine in life and I’m very excited to carry on doing so.
I’m running my first half marathon in September and I’m determined to smash it! I'd be so grateful if you wanted to check out my page, even if you can’t donate.
Thank you so so much!
If anyone is in a position to donate to Charlotte's fundraiser please use the link above, even just check out her page and share it on your socials, you never know who might see it and donate.
Raising money is such a selfless act, as so many thousands of people benefit from the money people raise.
Thank you so much Charlotte, your story is motivating, hard hitting, beautiful and tear jerking! It was an absolute pleasure to share your story and i hope you continue to grow as a beautiful human, we are so lucky to have you in the HD community.
I am sure everyone will join me in wishing you the best of luck with your half marathon, and send a massive hug to your mum and Nan, you seem like an awesome team and i hope one day we get the chance to meet.