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 

im done i don't want to be on earth anymore

Im done i try talk too my kids they don't listen they hell back always think they right they don't need my i been holding on for them but they don't need me im over living so  far away from family and medical help. I'm rotting need help but bush has none for huntingtons disease or ndis no support im done living in this nightmare something else broken car truck caravan batteries so we don't even have a fridge that works after generator's gets turned off. Im done living without my eldest son and the consequence him abandoning us and not looking back all us have to live without him and not talking to him because weren't not important to him all because his aunt nanna put ideas in head and wouldn't quit about moving im over the damage to my husband because of them all and their fucking ideas

I'm done he missed his sister 16th bday didn't ring were missing his 18th because he fucking lives 10hrs away don't have 1000 for fuel food he going miss my 40th birthday  because he can't afford to come we can't afford to go down. My 40th was supposed to be filled with all my kids my siblings and all my family the people i never see anymore

I'm going to kill myself before my 40th i can't think about spending the day with only 3 of my kids tim dad in lunch filled with food in the discussing mud dirt no where for my harry potter things because this season been so wet and we don't have tarp up only 2 gazebos filled with holes no way to spend time out there no wind protection nothing to keep elements off table area we should be at pub with all my kids all my family enjoying each other company food and my harry potter things we should be together like mum 40th. I can't believe my so never coming home and we are stuck out on the fucking qld bush with no support everytime something breaks we fix long time than something else break again the cycle won't fix than we have dad suck too because his bus doesn't go he can't fix or have money everything he needs money for to fix

I don't want to make it too my 40th bday so im going to kill myself within 2 weeks properly when kids are back at school so they don't see it

I can't live this live anymore everyday i think about killing myself i can't handle my head and heart anymore i failed my kids and my husband who going to struggle financially more without me i don't even think my kids with care or byron show  up for my funeral they will hurt but will live there lives fine

update for last year im over it never want to wake up again

The last 2 years has been hell on us. We has car troubles truck troubles caravan troubles. We haven't been able to move caravan AFrame broke. This Christmas was the 2nd without byron. He abandoned us and never coming home no matter how many times we asked him we had no control over him since he left, he doesn't connect any of us. I tried being strong but im too broken now. We live in the qld bush off grid no cooling no heating no running hot/cold water no toilet/shower inside little solar but need bigger new batteries so our fridge doesn't get warm temperature inside overnight we only have 1tiny car fan plus 2 small trough caravan our caravan isn't bug proof during the night they come through for lights tv phone screens so at night after generator's turned off at 8.30pm the bugs are annoying on our phones getting up my nose ears having to kill them instead of relaxing reading my book on my phone. During the day it the flies that are annoying wake me up in morning annoying dying day .between bugs flies spiders there is no break no relax time .not good for my mental health im not sleeping because of the heat here like having summer 9 months of the year. Im going crazy with all our money problems last year with fixing car and truck Never-ending money problems once something fixed another problem happens we missed grandma 80th birthday because we didn't have a ride down too Toowoomba Never-ending money problems we have been trying all year to fix our caravan so we can go travel see our son but as usual more problems we told rodney we were ready for our Aframe to be fixed he measured order steel which was $400 over what we thought  then we had to wait for him to be free to work 2 to 3 days while he was fixing it they found crack in truck towbar so another job needed fixing all up $3000 caravan/towbar. And because we didn't have any deposit 2 weeks before Christmas tim had to sign contract saying if we don't pay by april it will be put through business at price over $4000 and handed too debt collectors. All while this was going on our fridge stopped working food was off, so we had to find caravan fridge in desert at $450 was the only one i asked person selling if we could pay off $100 aweek since it was Christmas with kids. We still have $150 to go.first Christmas photo without byron so i didn't want tim n i in it like normal. We didn't make Christmas but we left on the 28th it spend late Christmas with byron 100km from home we were towing caravan with truck we had a grinding sound tim pulled over we didn't have 3 and 4th gears it was tim gearbox so we nursed home opened it up it broken so we waiting for local truck mechanic to openup and have look and see if he can fix it or we have to order new one online. All we wanted was 2 weeks away from this hell too see our son and families. We have so many things to pay for right now and back to me plus mione 16th is April she wants to go to seaworld swim with dolphins. All these problems are here can't help but be overwhelmed and exhausted from not sleeping in this heat. I planned my suicide and even told tim wrote the notes i can't leave this hell we are trapped here and I can't take it anymore. Im done i only hope my family helps with my funeral. Im waiting for centrelink loans to pay rodney in 2 weeks than im done i was meant to have funeral insurance but it didn't happen. We were meant to be out of this hell 2 years but as always we don't achieve anything we need or want i even tried selling jewellery but sold none last year which means nobody likes it. Im over not being near family or same town of my son,or being near my doctor please physiotherapists i like, living in the bush hell nothing to do or see or bad health care systems out here. Over the heat bugs spiders snakes over incomplete caravan my ocd is not coping.  My hubby even had has 1st mental breakdown last year in the 17yrs of marriage.  We all over the heat and my dad bullshit he going to be forever because he can't see the real truth come up with and actual working plan he can't see the truth he believes he going to fix bus and trailer but he hasn't done in it since he first started 8years ago. He won't start now he too sick and depressed. Snaps at us all. We been here nearly 4years because of covid and both his hips need replacing but only 1 has been done. Stupid government health care system suck so bad. 

So with our Never-ending problems money we tried so hard to tidy up our area and just have our caravan look after so we can leave this place for good. But nothing happens we need our caravan until we can get into disability home in Toowoomba or seq 

Nobody cares i have nothing to do so i watch tv all day eat myself to death no family no friends out here i tried but no im nothing but a burden to everyone 

I'm sorry im such a failure I'm sorry I'm not sorry enough 

i plan my death

I over life nothing but bullshit problems i want to die so i planned my death and wrote suicide notes im done fuck huntingtons disease and mental health ccaim waiting for tim to get loans for payment some of rodney money them i gone finally i can't life in this miserable heat fucking caravan not sleeping because of the bugs at night flies in morning im done with world i hope my family helps tim kids with funeral money cause we are broke no way out im a failure at all my jobs mother sister granddaughter aunt everything I try i fail life to hard without money