my family hd symptoms and people

Nanny 52 ,jen 49 ,grandmother 50, great/grandfather 53 all died it hit our family really fast . My siblings and 1have been hd symptoms for over 10 years some 15 years.  Once nanny and jen turned 40 everything got worst like the rest of us

Byron not calling me for my birthday I'm done

Byron Colley if I am your mum, aren't I even worth a phone call? After all these years you been living with Lucy. No txt/calls commutation I sick of txting and you never replying I'm sick of not feeling like your mother. I sick of you rejecting me ,I been talking with Dr Scott about your uncaring disrespect behaviour. Not ring me for my bday not caring when I txt you, I'm done I can't have you ribbing my heart out everyday. Top it of I don't even have your new number. I try so many times to tell you and commute with you but not don't give a shit about any of us. I can't walk without out falling I can't even eat my birthday cake without choking 😭😭 I'm getting so worse with my hd. And you don't know or care because your not around. I don't have long everyone said gave you time to grow up but it late I'm done feeling unloved. I so ashamed of your behaviour. I going to put my love and care for my 3 kids who talk to me every day. Who tell me everyday they love me. Goodbye Byron your not my son I would say don't talk to me but haven't in years.

when I'm gone

Being in afterlife is the most content peacefully place I'm ok take care of each other family is everything 

When I'm gone remember I'm at peace in the afterlife. That I'm not hurt anymore my body is healthy and my mind is happy. Picture me with all our loved ones at peace, being loved, being hugged. Being together doing things peacefully. I'm going to watch over you until we are together again. I will be right next to you always, always in your heart. I will watch you grow and always be with you. I'm watching every moment in all your lives. I'm always proud of you all my wonderful children. When I'm gone grieve but life goes so fast you will always miss me the pain does get better over the years but you will be sad and miss me and my hugs. Be brave be strong. I will love you all until the day after tomorrow love mama xoxo

huntingtons disease awareness month may 4

More huntingtons disease information 

huntingtons disease awareness month may 3

Welcome to Huntington's disease (HD) Awareness Month. 

May is a month for the global HD community to unite together to raise awareness for Huntington’s Disease. We work together to create awareness, educate the community and advocate for better supports and services.

During the month of May we are holding community events such as the High Tea 4 HD, Light It Up 4 HD, and Mother's Day Flower Stalls. If you'd like to find out more about our events, please email fundraising@huntingtonsaustralia.au

#KnownRareDisease #HuntingtonsDisease #neurodegenerativediseases #neurologicalcondtions #LightItUp4HD #HighTea4HD #LetsTalkAboutHD

huntingtons disease awareness month day 1 may

Starting tomorrow night as part of Huntington's disease (HD) awareness month we are participating in the international campaign #LightItUp4HD in which landmark buildings and bridges are lit up around the world in blue and purple lights.

Below is a list of some of the locations - we will post more tomorrow!

To see the full list visit https://huntingtonsaustralia.au/light-it-up-4-hd

If you are out about, take photos and share on social media, we would love to see them so make sure to tag us #huntingtonsaustralia #LightItUp4HD 

Friday May 3

🔹 ACT - The Royal Australian Mint

🔹 QLD - Brisbane -  Story Bridge, City Hall & King George Square, Reddacliff Place, Victoria Bridge, Breakfast Creek Bridge and Wickham Terrace Car Park Architectural Wall 

🔹 WA - Perth - Matagarup bridge, Sky Ribbon bridge, Mount Street Pedestrian bridge, Northbridge tunnel, Joondalup Drive bridge

🔹 WA - Geraldton - Queens Park Theatre

Friday May 3 &  Saturday May 4

🔹 WA - Perth - The Bell Tower, Council House, Trafalgar Bridge, Elizabeth Quay, Yagan Square

🔹 WA - Freemantle - Freemantle Prison

🔹 WA - Bunbury - Marlston Hill Lookout, Koombana Bay Footbridge, Arrol Crane at Jetty Road and Koolambidi Woola 

See you tomorrow 🙂

what is huntingtons disease awareness month 2nd day may

funeral details

Funeral details 

i want to be cremated my ashes divided between my kids tim dad siblings grandma

Cremate me cheap 

have a wake to celebrate mylife and remember I'm finally in peace. I can finally be with mum again. 

Songs wind beneath my wings 

Pink is my favourite colour so wear if you want

Food drinks music .

Put my photo in day of dead book write story about me so my kids can know me before hd.

I'm sorry your going to be celebrating my dead instead of my 40th which i didn't want to celebrate without my 4 kids siblings family like it should be. 

I love you all until the day after tomorrow love always jay 

huntingtons disease Australia mental health breakdown

https://youtube.com/watch?v=LMCDNAsFdbg&si=BmZBWCLcFwJRn8sh

death wish

To my family when i kill myself please help tim play for my cremation we don't have money for it unfortunately we were meant to get funeral or life insurance but we couldn't afford it. I'm sorry i failed you all i just couldn't live thie life anymore with no support. It's so hard and unfortunately tim kids are never getting out of this shit hole. When i die please take care of dad get him out of this fucking bush he can't live here forever and has no money to change it. Im sorry i left Toowoomba i should have never travelled and to see Australia but i did see a little before we got suck in sapphire because of dad hips coivd. There is no privacy in caravan no cooling either hot sand or wet mud bush shower spiders snakes never ending problems i couldn't live anymore i can't take another day without my son and the thought of never leaving everytime we try to leave something breaks than takes months to years to fix with little money  i don't want to be alone without you all and all of my children for my 40th tim 3 kids will be fine byron doesn't give a shit about me im sorry im not the warrior that should be i will be first to die i can't wait to be with mum again without pain everyday im in pain physically and mental health so im going to be with all our the love ones again. I love you all until the day after tomorrow. Until we all together again. Please take care of each other siblings are meant to be your built in bedt friends is ok to fight it about of life but so it forgiveness moving on we all suffering from huntingtons disease remember 

Family is everything i leanrt that from mum be there no matter what 

Love always jay xoxoxo 

Sorry i wasn't stronger