Monday, October 07, 2013


I miss mum every single day and wish is was with me again. The pain I feel is so heart aching some days I don't think I will get through it. I will honour her everyday by getting up and help Huntington's Queensland and helping Australians know about HD.

My kids need to know about mum and how much she loved life and them.

2014 Annual Huntington's Disease High Tea Fundraiser Flyer

National Huntington's Disease Awareness Week 2nd-9th September



Assorted tea sandwiches, Petite Cakes & Slices, Homemade Scones with cream & Jam, Gourmet Savouries, Coffee and Tea.

$35 p/p ($20 tax deductible donation)



Lucky door prizes, Raffles, Auctions, Multi-draw Raffles and games with Paul Reedy our mc/auctioneer for the high tea, fun & exciting afternoon for all.


Tickets sales cut-off date: 17.08.2014


Payment options: Cash, Cheque, Money Order, Direct deposit, PayPal.


2013 Huntington’s Disease High Tea Fundraiser, We raised $1802 for Huntington’s Queensland. It was in the Toowoomba Chronicle Newspaper, it was a great story.
All proceeds to aid Huntington's Queensland
ABN: 45 130 081 598 (REGISTERED CHARITY NUMBER: 1237

Tuesday, September 10, 2013

Huntington's Disease High Tea Fundraiser money raised

Hello Everyone,


I would like to let you all know how much we raised for Huntington’s Queensland. I couldn’t have done it without all your help so a huge Thank you from me, to everyone that helped out.


  $1540 Huntington’s Disease High Tea Fundraiser (Tickets, Raffles, Auctions)

+$  262 HD Raffle apart of the High Tea

  $1802 Total



We have raised $1802 for Huntington’s Queensland


I hope you all will continue supporting Huntington’s Queensland.


Thank you to all our sponsors and everyone who donated.


A Huge thank you to Paul (from K&R Plumbing) our MC/Auctioneer who made the High Tea a wonderful, fun and exciting afternoon for everyone.


Thank you everyone who attended.

See you at next year’s Huntington’s Disease High Tea Fundraiser.

Regards Jaime Colley


Saturday, August 17, 2013

Sharon Bere-Streeter (nee organ) Funeral DOB: 01.06.1962

We are having Sharon Bere-Streeter nee Organ funeral at St Luke's Church Toowoomba qld 4350.
Wednesday 21st August 2013 at 11am start
and her wake at St Luke's Church Hall after the funeral service 12noon.
All welcome who knew her.
Instead of flowers please make a donation at the church, all donations go to Huntington's Disease.
from the family.

Sharon Leslie Bere-Streeter nee Organ DOB: 01.06.1962- DOD: 13.08.2013 51 years olds

R.I.P mamma love you forever in your hearts


Thursday, August 15, 2013

mum has passed away

my mamma has passed away on 13/08/13 with her 5 children at her bedside laughing, talking, eating, drinking coffee and remembering her. I don't know how I'm meant to live without her. I can't even remember her voice. I wish she didn't have Huntington's Disease. I wish she was still here with us. My children aren't going to remember their nanny. Mum is never going to see them grow up. I feel like my heart is broken and never going to be happy again. I have so much guilt and I wish she could have said things to me but I know she understood what was going on. There was a tear on her eyes and I wish I knew why. She will never be forgotten and always in her heart. It's so unfair she was taken from us.

R.I.P Sharon Leslie Bere-Streeter (organ) DOB:01/06/1962- DOD: 13/08/2013 (51 years old)
Daughter to 3 parents, sister to 1, wife to 1. mother to 5 children, nanny to 11 grandchildren, aunty to 5, friend to many.

Our Father in heaven,
Hallowed be your name,
Your kingdom come,
Your will be done,
On earth as in heaven.
Give us today our daily bread.
Forgive us our sins,
As we forgive those who sin against us.
Save us from the time of trial
And deliver us from evil.
For the kingdom, the power, and the glory are yours
Now and for ever.

Thursday, August 01, 2013

details update

I have started 2 new blogs:

Huntington's High Tea 8th September Highfields Qld

Hope to see you all there


Huntington's Disease Raffle

We are having a multi-draw raffle to help us with the costs for our Huntington's High Tea on 8th September 2013. It would be great if you brought a ticket or two. thanks


mum sick

hello everyone,
Sorry I have been absent. Mum wings at bupa has been shut down because of loose bowels. So I haven't been out to see her. And I have been planning a raffle and high tea for Huntington's Disease Week 2nd-9th September.

Monday, July 01, 2013

why is dad so cruel?

Dad and I just had another fight. I put to much pepper on his dinner, so he storms off. I yell through the door that I can't do anything right. He came back in and I lost it with him, and I can never do anything right where he is concerned. I storm off to my bed and he goes out front yard where his bus is park. He comes back in to yell at me more because of the fucking pepper, so I tell him how I feel. In his eyes I can never do anything right. Then he leaves and than comes back into my room and tell me he is packing up and  moving out when he can. I tell him as he is walking out that he is very immature. Than he comes back in and starts yelling at me again telling me to get over my depression and Huntington's disease because I'm selfish person. That we all have Huntington's disease because they didn't know about at that time. And I use depression and Huntington's Disease as an excuse.That I have 3 children who love me but I treat them like shit and bad mother. Then he goes on about if Tim left me for another woman dad would be happy for Tim because I'm a bad wife and treat Tim like shit. All the time while he was yelling I was holding me pillow and keeping me mouth shut.
He has gone to far, I can't forgive him for what he said. For the last 9 months or so, I have taken too much crap from dad from being on the computer to much, to telling me I'm a bad wife and it's always my vault when Tim and I fight (Tim can never to anything bad as far as dad concern), To telling me I'm a bad mother, to telling I'm fat and need to lose a lot of weight, telling I sleep to much, to telling dinner was to cooked, or not cooked enough, to much spice, to little spice, telling me to get over or yelling at me for my germ phobia, yelling at me for me telling him not to wipe his hands on my towel, telling my house is disgusting, swearing at my kids, treating my kids like shit, complaining about the fucking shower curtain, he has such a bad temper you evoid talking or asking him anything because he will fight with you, gets upset with me when he asks for money but I tell him to talk to tim who controls our money like I should be doing it not tim, and the list goes on......

How does he except me to just get over mental illness and Huntington's Disease? He has no fucking clue with I live with daily. I'm watching my mother and wondering what I'm going to be like. I'm a person that is helping 4 people at a time and get stressed a lot, so what if some days
i don't want to get out of bed or have a shower until late afternoon. or sleep until lunch some days, I'm so tired some days that I just can't get out of bed.I have a big heart and it gets broken to much. I let people make me feel worthless.

Dad is a person who if he says the sky is gold than it is gold, don't argue with him or he will break you down and make you feel bad or you will back down to him.

I love my dad and respect him and hold my tongue. But I guess he doesn't respect me or he is still living in the past. Sometimes I think he users what mum did to him in the past against us. He talks about what mum did to him with such hatred. It hurts to hear about their relateionship but mine isn't anything like theirs. I love my husband and children more than my life and would do anything for them.

I will forgive him one day but I don't need him putting me down, I feel enough guilt daily.

raffle has been drawn

thank you to everyone who helped. we raised $234 for Huntington's Queensland

Sunday, June 30, 2013

Australia national Huntington's Disease awareness week is 2nd-9th september 2013

What will you be doing in your town for Huntington's Disease Awareness week?

I'm going to organize a high tea for toowoomba qld.

Do you live near your loved one who are sick? i would love to know what you think!!!!!

Feeling really sad deep inside right now, I was thinking about people who aren't living close to there loved ones especially loved ones who are sick or slowly dieing. I couldn't imagine not being close to my mother or living to far away or not being there for her or not visiting when I can. I feel really sad when I think of myself when I'm going through symptoms of HD and living in care and not having my loved ones there for me. And not visiting or caring enough for me to want to visit or do nice things for me.

Is this just me?
 or is there anyone out there that loves someone who is sick but doesn't live near them?
why don't you live near your loved ones?
why don't you live near your loved ones?
why do i feel anothers aren't there for my mum?
is it because i different from them? or I put mum's needs ahead of my own? or is it just because I'm special?

I really don't know why, so i would love to hear your comments/emails/thoughts on the subject.

Saturday, June 29, 2013

How can 1 person stand up for a cause by themself? please help me

I'm so frustrated and angry with people not helping me. I'm being made to feel worthless( by a staff member at Huntington's Qld) and not wanted, like I'm the only one fighting for this disease and Huntington's Qld. I'm trying to save Huntington's Qld from closing because of lack of funding and what funding they are apply for might be given to another charity. Not many Australian know about Huntington's Disease and Government don't think we are worth giving funding to. I have to watch my mum suffer with all the symptom's of HD and I would have killed myself just after I found out I had Huntington's Disease, if it wasn't for Huntington's Qld. Christine saved my life and helped my through all of the shit you go through when you find out you have Huntington's Disease. Without Huntington's Qld my children will have no one to help them, when it's time to get themselves tested. And will be in the dark about Huntington's Disease while growing up and watching me going through the symptom's of Huntington's Disease. ??Huntington's Qld has help my family and mum in so many ways over the years. Even 1 of the workers remember my grandmother, who died when I was little. I didn't know my grandmother and all the info I have about her didn't make up for not knowing her but talking to that 1 person about my grandmother was amazing. Huntington's Qld has to open to help all the generations to come with Huntington's Disease or watching someone they love go through the symptoms of Huntington's Disease.
No is no cure for Huntington's Disease, so please help me with my mission to make the Australian aware of Huntington's Disease and what the people with it goes through and their loved one and their carers.
I need to stand up and help others people with Huntington's Qld, so they are not in the dark about Huntington's Disease.

It doesn't feel good having a panic attack about Huntington's Qld shutting their doors. We all need to help them keep their doors open. Being members and paying the membership fee $20 single or $30 family will help keep their doors open because the more members they have the better chance they will get funding. I have put the membership form to download on my facebook page Huntington's Dis AC. If you would like a membership form, I will print and send you one.


regards jaime

Friday, June 07, 2013

special project

I'm doing a special project with my sister kelly today but didn't finish so we will be doing more tomorrow. It's for her tafe work but i'm going to put it on my blog. So we went out to mum's to do the project for good lighting and less noise. After we were done, we went and saw mum for a quick visit. She was asleep when we walked through the door and just when i was telling my sister to back up mum woke up. It was spooky like she knew we were there lol.

Saturday, June 01, 2013

My visit with mum for her birthday today

Well we just spent  2 hours out with mum for her birthday. Mum is 51 today, I can't believe how fast the last year has gone. Mum loved her presents and couldn't get enough of her cake I made for her double choc cake with cream in mum bowl. It was so yummy and moist. I read to mum and then we had a visit with the chicks again. One chick just sat on her and went to sleep. After our visit with the chicks, we took mum back to her room and I read to her until she was asleep. It was a bad day for mum today, she was tired and distant like she couldn't focus. So not much talking and not showing her emotions today. It was a very draining visit on me. I have some photos to show you all.

Melissa and family went out for 25mins this morning and bought out some pictures/drawings the kids made for nanny( and I put them up for them when I arrived today). Melissa's son hayden made the cutest card ever.

I can't believe my other siblings are going to take mum out for dinner. She will be so exhausted, I hope she gets to have a good sleep this afternoon.

I also took down the family tree I made for mum's room and will be rearranging it and putting more onto it. It will be back up soon.
Us and mum opening her presents and having her birthday cake.

Visit with the chicks

Mum drinking one her thicken drinks for weight gain

Kids coloring in while I was with mum

 Where the family tree use to be, replacing it soon.


When do I stop worry about mum?

I take care of mum by :
- Having care plan meetings with the staff at bupa. Which includes talk about all aspects of mum's health plus normal daily living.
- Making sure she has clothes the right size. With the help of bupa and public trustee.
- Make sure I try and visit up to 3 times a week. Since I have 3 children under 7 it's hard to get out there daily, like I want.
- Try to turn up for all her events/parties out at bupa which Mum is involved with.
- Make sure her room is beautiful and cheerful and keeps her brain stimulated.
- Make sure there a things out there for the nurse to interacts with mum. Visitors book, communication book, poster board and family tree.
- Talk to any specialist when needed or go with her to her appointments.
- Read to mum Danielle steel book, which are her favourite books.
- Have a good chat with mum and tell her what is happening in our lives.
- Clean out her wardrobe and tidy her room when needed.
- Feed mum when I go to visit, if at meal/snack times.
- Attend exercise class when I can get in there.
I know it's my job as her daughter to be there for her and do anything she needs me to do. But when do I stop worrying about mum? I think about her all the time and wonder what I can do next. I stress about her safety all the time. I need to be actively involved in mum life and take care of her in my own way. I do try to be there for her as much as I can.
So I guess my question is-
When do I stop worry about mum?
Is this normal for a daughter who's mum has HD?
or Is it because it is just who I am in my heart?
Are you the same or have you been in my shoes? I would love to hear what you have to say.

What mum needs not what people want!

Once again no one listens to me and the doctors orders. It was brought up that mum shouldn't leave bupa for parties etc anymore because of health and safety. So we were waiting for doctor to seek what he thought and get a letter with details of  what he thinks mum is capable of doing. I saw her doctor this week and he agreed with me to certain points.

I'm having trouble with people understanding what mum needs are. Mum has changed so much that she is getting weaker, and gets tired really easy, she is more prone to hurting herself and has a harder time swallowing and falling when she is tired, mum can't control her body functions when consuming alcohol. Not to mention how hard it is to get mum into a car and have her seat belt in safe position, as it moves continuously as mum moves.

This is why it's not safe for mum to leave her safety net of home. There is no reason in the world why they can't go out to see her where she is safe and comfortable. Instead of her being dragged out where too many things could go wrong. Mum should only leave to see her doctors or specialist.


mum birthday

It's my mum's 51st birthday today, so young but her body is old. I can't believe how fast the year went. I'm baking her cake and taking it out to her soon. I got her a beautiful blanket and gloves (made by yvette) and treats for her to eat. I haven't go candles, so I will have to stop on the way there and get some.


Thursday, May 30, 2013

My visit with mum today

Went out for Mad Hatters day at bupa today. It was crazy with all the different hats and to see all the different people. The staff put on a great show and got right into it. It was so exciting and fun. They were dancing and singing. Byron even got up from his sit and did the chicken dance. Everyone had hot dogs for lunch. But mum had her usual lunch which I feed her and an extra helping of cheesecake lol. Mum had a great time. It was great to see the staff like that and I picked up on some things which were great to know. Can't wait for the next crazy themed event.

When the mad hatters was over, I told the kids to wait near the chicks while I helped mum to her walker. We saw the chicks and had cuddles and I rubbed the chicks against mum's cheek and she loved it. Mum was really good at holding the chicks and eased up when I told her too. Mum is really strong and doesn't know her own strength. 1 of the eggs was starting to hatch, so there will be other chick tomorrow. It was great Wyatt finally touched one and even gave it a kiss.

Then I took mum back to her room, checked the visitors book and wrote in it and then read to mum. She was moving a lot today and didn't really settle like normal, when I read too her.

I was so exhausted from the visit with mum, I had to come home and sleep, (Which I did all afternoon).

thank you for reading my blog