Hello!My name is Charlotte, and I am from North Yorkshire, England.Huntington's Disease is a hereditary disorder of the central nervous system, it is a progressive disease, meaning it gets worse with time. The disease occurs due to a faulty gene on a chromosome, which is passed on from a mother or father, and the disease runs in my family genetics.
When I was younger, I was aware that my Great Nana was poorly, and had to be cared for in a nursing home, as I grew up I learnt why. The disease made her often aggressive, hard for people to understand what she was saying, as her speech was slurred and her walking almost none existent. She died when I was fairly young, but then as I grew older, and I started school, my nana began babysitting me and my younger sister, as my mum worked long hours, she took us to school and picked us up, cooked us meals, took us both to dancing classes almost everyday of the week, waited hours for us to finish, she was like my second mum.
But as time went on, I saw her become less of the fit and healthy woman I once knew her as. I learnt she had inherited my great Nana's gene, and that she had HD. She could not longer look after us as well as she used to, as she found it difficult to walk. I noticed jerks in her movements, she became very anxious about everything, from me and my sister getting to school safely, to why my mum wasn't answering the phone, it became difficult for her to swallow and eat. Furthermore, she often finds it hard to say what she wants to, due to slurred speech, and delayed thought processes, which can be very frustrating and upsetting with two granddaughters who never shut up.
As me and my sister got older, and therefore able to take care of one another while mum was at work, our Nana took a back seat, but still was and still is a mother figure in our lives. Not long after we began to notice my Nana become poorly, we discovered our mum had tested positive for the disease, she gave up work all together. She did this so she could take care of my Nana, and take care of herself. 
My mums symptoms are different to my Nanas, as the disease presents itself differently in every patient. My mum often gets irritable (not much, because she has learnt to control it, and we have learnt that it is not her getting angry, but the disease), she gets bad pain in her hands and her feet, finds it difficult to balance sometimes, difficulty in concentrating, is sometimes very excitable for no reason or sometimes is very down and upset.  She sometimes forgets things that you and I wouldn't, but as I have grown up with the disease, I have learnt to see through all of these symptoms, and still see my mother, and my nana as the perfect, selfless, loving people that they are. I just wish others did. I have been out with my nana before, before she was bound to a wheelchair, and asked if she is drunk, told that it is unacceptable for a woman of her age to be drunk and out with a granddaughter in broad daylight, when actually she was just unsteady on her feet and her ticks/jerks were playing up due to anxiety that day. I have been asked why I am late to school, and not wanted to tell the class that my mum was in so much pain she could not get out of bed, so I had to call 999, and travel to hospital with her alone, as a 13 year old. 
My nana is now in full time care, in a wonderful nursing home close to our home, and we have learnt that taking away her anxiety, improves her speech and her movement, and she is more often than not a lady who you most definitely would enjoy a conversation with.
Me and my sister have learnt that we are very lucky, and very privileged to be daughters and granddaughters, of such great women, and that this horrible, painful, life taking disease will not conquer our family, and will not cause us, my mother, my nana or anyone affected by their pain; defeat or sadness.I realise jumping out a plane seems like a mad thing to do at 18 years old, for a disease that many people may not of heard of, but awareness is the key to a cure. If more people know about this disease, more people can understand that my nana isn't drunk, and my mum didn't forget to ring somebody back because she is inconsiderate, but rather the disease makes her a little forgetful at times.
I want to make a statement by doing this Skydive, I want it to symbolise how strong we are as a family unit, and how weak this disease is in bringing us down. I want it to symbolise my lack of fear of the future in this disease possibly being passed onto myself, one day the cure will come, and one day HD won't be the reason a girl like myself cries because her mother or nana or any family or friend for that matter, isn't the person that they used to be.Please help me, in ensuring this disease doesn't carry on for much longer.Ps; if my nana knew I was jumping out a plane for her she would probably say 'you're blooming not' and probably wouldn't sleep at night until the day I do, so I will just tell her afterwards, haha.
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