In 2009, due to our expanding family with the birth of our second son, we decided it was time to sell up our first home in Farrer. We purchased our new home in November 2009, in Weston.

In purchasing the property, we enlisted solicitor support, and there was no mention of any concerns in the building reports that would make us think twice about the purchase.

In 2011, our little boy Nicholas was diagnosed with a brain tumour. We spent a long time living in Sydney and longed to be back in our safe haven, with an even greater desire to have a healthy boy with us – finally that day came.

I recall the day we were able to bring him home to Canberra. All we did for the next month was lock ourselves in the home we loved, where we could bring him back to good health and ensure he felt safe again. It was the toughest time we have ever gone through and that house became even more special to us, as it provided the environment we needed to hold our family together over a traumatic time.

In early 2014, we made a decision to make our final investment on the property by landscaping our huge backyard, building a huge deck off the upstairs and knocking out the majority of the upstairs back wall to insert bi-folds onto the deck – it was during this project that we realised our life was about to be turned upside down, and everything we had worked for was going to be taken away from us.

Despite having received what we thought to be a very generic letter in February 2014, it was the removal of the wall that the builders informed us we had a 'Mr Fluffy' home – we had never even heard of such a thing. The next thing we knew we were forced from our house with our boys and required to stay with my brother's family for the following three days while the back of our house was 'in a bubble'.

Thankfully we had the all-clear on the removal of the asbestos from that part of the home only.

We were, and remain, absolutely devastated. The house we bought became our home and the place we wanted to continue to bring our three boys up – but we wanted to do so safely. We feel vulnerable and anxious, and we also now feel a sense of guilt, that the work we undertook in the house, including removal of walls and ceilings which our boys helped clean up, could have potentially put their (and our) lives at risk with exposure to a toxic substance that we were never made aware of.

The distress on my wife's face each and every day I come home from work reminds me of how she

looked when our little boy was suffering in intensive care in Sydney following radical brain surgery, and it kills me that I am utterly powerless to take the pain and uncertainty away from her, both in terms of our long term health and in terms of our financial outlook.

Christine, 66, Ainslie

I have lived in my home since 1978, my three children were raised there and it is the home I shared with my late husband.

The first we knew about Mr Fluffy was during the 1980s–90s clean-up program. It had been installed prior to our purchasing the home. Our entire family was uprooted during the clean-up and moved back in under the impression that our home had been made safe. That period had a huge impact on our family, with my daughter in the middle of year 12 and my son in year 10.

Upon returning home, we found our gardens damaged and a substantial tree in the front garden pruned so badly that it had become unbalanced and unstable and had to be removed by an arborist at our expense. There was damage to areas inside our home including where the 'cleaners' had jammed a bent coat hanger into the back of the television so that they could get reception. My husband, now deceased, came to collect the mail one Friday afternoon to find them in our spa, watching the television they had dragged out onto the veranda.

All that said, it was a huge relief to move home, to what we believed to be a decontaminated and safe environment. In subsequent years my children grew up, got married and had children of their own. My son, son-in-law and daughter all entered the roof space and sub-floor to install insulation and carry out minor works to help me out. I now know, after the 18 February 2014 letter, that they have worked in contaminated spaces and I feel considerable guilt that they have most likely been exposed to loose-fill asbestos fibres. My grandchildren have been present in the house when minor renovations have taken place, where internal wall spaces have been disturbed while electrical sockets have been replaced, etc. I would never have let these works be conducted had I known that there was any risk to my family.

The re-emergence of Mr Fluffy into my life has been hugely traumatic. I am a 66-year-old, semi-retired widow living alone in my family home. I have never in my life known such stress and anxiety for such an extended time. I am very worried about the future and how I am going to manage this situation. I am unable to sleep and have had to see my doctor to get sleeping tablets, something I have never needed before. I worry deeply about the health impacts on my children and grandchildren as well as what I will do now that my home is basically unsellable and subsequently worthless.

I love my home: it is filled with a lifetime of our family's memories. I despair over having to leave my community where I attend church, volunteer at the local primary school and have the love and support of my friends and neighbours. I am confused and anxious about what the future holds. I am semi-retired, working only one day a week and therefore have no capacity to start again financially.

I feel very distressed most of the time and there is never a day that goes by where I do not cry. I feel let down by the whole asbestos removal program, which left us believing our home was safe, when it so clearly was not.

Lola, 59 and Graeme, 65 Kambah

Lola: My home of 20 years was my place of peace as I love my magnificent view of the Brindabella Mountains. My husband retired to finish doing up the house as he is a great home handyman and it would save us money. I had my plans of the beautiful gardens we were about to start in the spring. We have put a lot of money into renovating this house ready for retirement and bought good quality furnishings that would last many years as we knew we could not afford to ever purchase these again. Our plan was to enjoy this house for up to 10 years and then downsize but have it ready for sale if anything happened to either of us. We love entertaining. My husband makes the best roast dinners and family and friends love getting together here. We have family and friends for a huge Christmas dinner with all the trimmings. I often have people over who have no family in Canberra so they can share the chatter and family celebrations.

I have had Retroperitoneal Liposarcoma (a rare form of cancer contracted in 2008). I have so far lost my left kidney, spleen and part of my pancreas. I only have 50 per cent function in the remaining kidney. I have been beating the odds with survival. This type of cancer is very aggressive and doctors say it will return. It can have three possible causes and one they believe can be ingestion of asbestos fibres. I don't believe I have been exposed to the other two causes. I have been on some expensive alternative therapies which are working at the moment so I can't afford to now start paying rent. When I was ill with chronic fatigue and could rarely get out of bed I had a glass of water next to my bed all the time. The ensuite next to me had an open fan vented into the roof that would have been there from before the original clean up. These fibres would have been circulating in the air especially when the ducted heating was on. Heavens knows how many I may have ingested. I also have a constant struggle with a very high triglyceride level which is affecting my heart so I must have exercise, relaxation and no stress!

My husband and I saved and saved for retirement and to pay off the house and now we are on a very minimum wage and part pension. I am worried because I also have a 37 year old son who lived in this house for 18 years and is partially dependent on me. He has had a stroke and is an uncontrolled epileptic. He works part-time and lives in a bedroom in a shared house. When he collapses I drive him home, take him to doctors, do his shopping, and often bring him to my home to take care of him as he can have trouble with balance for a week or more after a turn or while doctors adjust medication. We were about to put in a kitchen downstairs as it is difficult to get him upstairs when he is groggy.

I shake most of the day now and my heart races. I am teary when I walk into my newly renovated dream kitchen. I worry that my three sons and my adorable three grandchildren have been exposed to this dangerous asbestos. I sometimes mind my grandchildren while their mother works. My husband often looks as white as a sheet and is exhausted from stress.

I am angry at whoever allowed this dangerous substance to be placed in this home, and then that the job of removal was botched so my family now pays the price! The Federal Government recognised there was a problem so I believe they should make an effort now to rehouse the victims. How would you like this to happen to your family?

Matthew, 28, Queanbeyan

Mr Fluffy coming to a head has impacted me in three main ways.

Financial: As I have an unremediated Mr Fluffy unit, I have made the difficult decision to remove my tenant meaning that I have severely limited my financial stability. Currently I have rates, water, insurance and mortgage repayments coming in with no rent to offset them. Further to this I have recently been made unemployed – although this will be likely temporary, the financial strain leads straight in to the emotional Impact.

Emotionally: I am struggling in being a landlord of a house that I believe could hurt someone. Although the NSW government says that the units are likely safe I have huge doubts. I am struggling because I can't see a way to morally get out of the Mr Fluffy saga without becoming bankrupt morally or financially.

My financial stability is entirely linked to my emotional stability. The NSW government statements to date have caused me more concern as they have been unclear and off the cuff without clear plans and structure to back them.

Health: I as far as I am aware have not had significant health complications due to likely exposure to Mr Fluffy however as I have existing lung conditions it is hard for doctors to tell if there are other things at play. This means that I have had to have X-rays of my lungs and will likely have to continue to doing this when my lungs play up going forward which increases my risk of other issues. Since finding I had Mr Fluffy in my unit my stress has led to many more days off work than normal with real illnesses but because I'm constantly on edge and don't see a resolution I'm run down and cannot recharge.

Lori and Alf, 65 and 71, Kambah

(Lori) My husband and I bought our home in Kambah in 1995 taking up residence in January 1996. We have lived here continuously since then. When we bought the house the sale documents were accompanied by a Certificate of Completion of Asbestos Removal Work. We were assured by the agent selling us the house that all was well.

Shortly after moving in to our new home we removed an old non-working wall heater and my husband repaired the wall where a cavity had been left. We also carried out extensive renovations to the house.

At the time of receiving the 18th February letter regarding the Mr Fluffy issue my husband had been diagnosed with Lymphoma which required treatment by way of chemotherapy. We concentrated on his treatment for the following months and left the Mr Fluffy issue for later.

We registered with the Asbestos Response Taskforce in July and had an inspection carried out on 13 August. The report was received on 20 August showing areas of concern in bedroom wardrobes, the linen press and the laundry cupboard where dust samples taken revealed that amosite was present.

Before my husband was diagnosed with Lymphoma we were planning on selling our home and buying something smaller – more attuned to our needs. To this end we had started work on the grounds of our home to get it into the best possible condition for sale. We had undertaken extensive landscaping work which remains incomplete due to the possible demolition. Further plans have had to be put on hold until we find out what the government plans to do with the Mr Fluffy homes.

My husband and I are both pensioners who own our home. We are not financially in a position to knock down and rebuild our home unless there is some way we can be compensated for it. If that were to happen, we would agree to move out and let the house be demolished. This would of course depend on us being able to afford to buy alternative accommodation.

Sharon and Damien, 40s, Flynn

Our plans, no, our world was shattered at 6:00pm on 16 July 2014, when we read the registered letter, we were not prepared for the enormity, the impact or the gamut of emotions the words contained within held.

We have cried for what we have done to our children.

That you as a parent have put the lives of those you love most at risk. Because you bought a house, because you let them help dad clean up after a long weekend's work on the house, we wouldn't let them in a car without a baby seat, but God forbid may have exposed them to a substance that could see them die a premature and agonising death.

PW, 59, Forrest

We cannot control the situation or the risk!

We also have a son with a significant intellectual disability. How can we explain to him the situation and what not to do in relation to risk management?

We have lost confidence in the safety and comfort of our home. There is now an undercurrent of anxiety and daily concern within the house (due purely to this situation) rather than a pride in the environment we produced in which to bring up our children. As a result the memories and joy of our family's life in our house in the last ten years has been diminished.

Kathy Pryce, Flynn

"In between my three-month cancer scans I get to live life and not worry too much about things. I am able to focus on living and look forward to the future. But the asbestos issue has now stolen those few carefree 'in between' months away from me. It is now a constant daily life of waiting. Waiting for scan results, waiting for asbestos test results, waiting to find out if we have to evacuate our home, waiting to find out what the authorities are going to do about our home, waiting, waiting, waiting, waiting."

Anonymous, Griffith

The situation has brought back sad memories for my family as we have been through the loss of our house before. My parents lost our family home through compulsory acquisition in the 1970s by the NSW Government to make way for a new highway in Sydney. It broke the health of my father and my grandfather as they had actually built the house with their own hands in the late 1940s.

At my advanced age having invested in our house over many years and with a family inheritance at stake we feel cheated by a past ill-informed bureaucracy and cavalier attitudes to risk.

We watched with horror how the company James Hardy fought bitterly and dishonestly against compensation for the victims of asbestos building materials and manufacture. They knew, and it is now clear that the Commonwealth and ACT Governments knew, about the risks and yet here we are in 2014 about to repeat the mistakes of the past if we do not get comprehensive and compassionate action by the responsible authorities.

My daughter would have eventually inherited the house, my principal asset. She has had limited opportunities in life to earn a good income because she was brain damaged as a child and suffered breast cancer as an adult, and I really wanted her to have the security of this inheritance in her old age when my wife and I pass on. I am very worried about how things now stand.

Clare, 39, Hackett

I hope to God that in the not too distant future, we will be back on our plot of land in a fluffy-free house and that we can start to put this nightmare behind us. More than anything, I hope that our daughters have not been exposed to a dangerous amount of amosite. Will I spend the rest of my life wondering?

Will I die wondering?

Kieran, 35, Kambah

We bought the house over four years ago and have been slowly renovating it ever since. We spend most of our weekends and all of our spare money improving our asset. I have crawled in the roof-space and the sub-floor countless times, my six and three year old children have followed me under the house for an adventure. I cut holes in walls and ceilings, even removed a large section of the external wall to install bi-fold doors, which required approvals. Throughout the approval process, at no point was I informed that I may have remnant fibres of loose fill asbestos in my walls, ceiling and sub-floor.

What pisses me off is that my sub-floor has all been sprayed white, which means even back in the 80s when they did the remediation they must have known that the fibres had fallen down the cavity.

We have had our asbestos assessment done and the house has been deemed unliveable.

Nick, 28, Latham

The stress that the "Mr Fluffy" situation has put on me (and my family) is more than any family should ever have to deal with. I live everyday concerned, stressed, overwhelmed and saddened with the fact that I could have been putting my son's, wife's and newborn baby's health and life at risk, not to mention the house I have worked so hard to provide for my family is worthless.

I don't really know how I have been functioning since the 23rd of July when I found out what nightmare we were faced with. I have had countless sleepless nights wondering if everything I have ever worked for is now gone.

I am embarrassed to tell people that I own a "Mr Fluffy" house. I can't stand the thought of others judging me and my family for making the wrong decision to purchase the home less than one year ago.

We now have to pay a mortgage on house that we can't live in, can't rent out and can't sell. My wife is due with our second baby in the next few weeks and we are sleeping on a mattress on the floor of her parent's house. I feel like I have failed as a husband and a father.

The feeling of dragging yourself to work, through the day to put your money into a house that is worthless is so overwhelming. I find tears welling up in my eyes when I am at work and not wanting to interact with my colleagues at lunch for fear of breaking down in front of them.

The uncertainty of not knowing when or what the government's decision will be is sending me crazy. I feel like I can't keep going on like this. There are so many questions I have. I just don't know how many more sleepless nights I can handle.

Annabel Yagos, Fisher

How do we move on from losing everything that has been our past? So many loved, treasured, passed on family belongings, and all of the beautiful things we have bought to create a loving home, including treasures for our children. In one moment, they have all been lost. We know there are memories we can now never pass to our children when they are older, things we could give our grandchildren. This has been taken away from us and so many other families.

SM, 37, Melba

My beautiful, clever and funny two-year-old daughter may right now have jagged little fibres in her lungs that could reduce her entire lifespan to twenty or thirty years.

Thinking of it makes me very, very angry. She shouldn't have to grow up with that knowledge. As a father, I want to protect my little girl from everything, at all costs. I know that's impossible, but it rips my heart out to know that she's already got this weighing against her because of decisions other people made long ago.

Likewise, the lives of almost all of my family and friends and the tradesmen and other visitors to my home over the years, plus an unknown number of people who've been inside and under the house before I bought it ten years ago – are they now under a cloud? And that's just from my one house.

Imagine that many people, multiplied by more than a thousand across the ACT and NSW.

All of this could have been avoided if the Federal Government in 1968 had not ignored the

commissioned, professional advice to stop Mr Fluffy asbestos from being put into homes.

Another opportunity to put an end to the problem was missed in the late 80's, when the decision was made to remove some of the particles and then tell the homeowners that they'd undone their mistake and the houses were now fine as long as large parts of them remained hermetically sealed for all eternity.

Why was I allowed to buy a contaminated property with no more notification than a poor quality photocopy of an old certificate buried amongst piles of other old paperwork? I paid tens of thousands of dollars in stamp duty to the ACT Government as part of the purchase, why did this not buy me any level of consideration regarding the safety and suitability of the property? Why did the photocopied certificate not identify the subfloor as a potentially contaminated area that nobody should enter? The previous owner had obviously been using that area as a workshop and for storage for many years, so he didn't know either.

Lisa Ziolkowski, 32, Latham

In one day we lost our home and all of our belongings. We had to leave with only the clothes on our backs, which also needed to be promptly replaced and disposed of like toxic waste. We suffered loss equivalent to a bushfire or flood and yet despite our comprehensive insurance, we wouldn't receive assistance because no policy covers asbestos related loss.

Tracey and Duncan, 45 and 44, Hughes

The knowledge that we have deadly, loose fill asbestos in the walls of our family home has had a devastating impact on us. We bought our home because we wanted to raise a family in a house with a tree to climb, a passage to run down, big wardrobes to hide in. I don't let my children play hide and seek any more because I am scared that what is in those corners or under that bed might kill them.

Every thought is now driven by the fear that my children are at risk. I stand staring at the cracked cornices in my five year old's room, and worry. I stare at the pile of soft toys in the corner of my nine year old's room, and worry. Every time my oldest daughter coughs, I freeze. She has been coughing for nearly two years now. She has seen doctors and specialists but still the cough persists. Is it asbestosis? Have we done this to her?

We no longer have friends or family visit us. My daughters can no longer invite their friends over for play dates. I can't donate my children's out-grown clothes to charity. Everyone knows that clothing and soft furnishings are being destroyed in homes where asbestos fibres are found. While we wait (and wait) for our asbestos assessment, we are walking around wearing those clothes, we are living soft furnishings.

My oldest daughter loves our home and has said many times: "Mummy, promise me that we will live in our house forever". Her words used to make me smile because it meant that she was happy and secure in her life. Now her words hit me in the gut. One day soon I am going to have to tell her that we are moving. One day soon she is going to see her beloved home reduced to a pile of rubble.

Every child has the right to feel safe and to live in a safe environment. My daughters have that right. Our home is not safe. It is not our sanctuary any more, it is our enemy.

Anonymous, Woden

I have poured my money, skill, blood, sweat and tears into this house to make it into a home for my family. It is now a worthless empty shell. No-one visits any more. My eldest told me the other day that he knows he is going to die from mesothelioma – this is from a well-grounded young man with a bright future in civil engineering. That is when I broke. I couldn't say no. I couldn't reassure him and I sure as hell couldn't fix it.

I feel so guilty. I thought I was doing the right thing by my boys; making them help their father during renovations, showing them how to work with their hands. I dragged my beautiful boys (young men now) through all our renovation work: they lugged sheets of gyprock I had pulled from the walls, they dug under the house to remove (contaminated) soil, and they got covered in dust. I feel as though I have contributed to their pending deaths. I know that sounds melodramatic but it's how I feel.

I am so angry that words cannot describe the rage, humiliation and utter helplessness of the past six months.

Finally, I want whoever reads this to know that I want to rebuild. This is where I grew up. I do not want to live elsewhere. I chose this block of land. It's well and truly mine. I know the house and our memories need to go, but I'm buggered if anyone in the government is going to try to buy me out, only to make me live somewhere I hate.

Sandy, 63, Yarralumla

I now have the final report, which indicates that the internal four areas, including the kitchen that I cleaned, are rated as 1B – which is a combination of severe and high-risk. I feel sick! I find I am leaking anger and unable to cope with the smallest of upsets in my daily working and family life. I have just booked in for mental health counselling.

Julie, 40s, Woden

I am sure every family is in turmoil but there is just an added complexity with a disabled child that I doubt many people can appreciate unless in a similar situation.

I also own a home in Farrer which unfortunately is also a Mr Fluffy home. I can remember thinking when I found out our home was affected that I could modify our Farrer house to suit our needs but unfortunately that option came crashing down – that was the first but not the last time I felt panicked.

Geoff and Marg, 60s, Macgregor

There is no doubt that this is a complex and costly problem that I know the government is working on but direction is urgently required. It would no doubt be costly, on a long term basis, to merely keep patching up while problems continue to raise their heads over the years to come. A final lasting solution is required to put this behind all concerned and allow us and the government to move on with a clean slate.

Nathalie Ross, Lyons

I was stunned to discover that my home was filled with a carcinogen. I was stunned to find that the ACT and Commonwealth Governments knew this and failed to explicitly tell me. I was stunned that the same building inspector and the same conveyancer that we bought through and intended to sell through did not explicitly tell me that this house was a health hazard. I am stunned that my bank signed off on a mortgage on a house that needs to be demolished. All these people knew the history of this product in Canberra. I did not know because I come from Victoria.

John Jorritsma – died of mesothelioma on August 6.

Advice to his tradesmen sons.

I guess I never really took asbestos seriously. Now I tell my boys not to go near the stuff. Just, please, do not go near it. Don't touch the power points. Explain to the owner that you can't work on the house, that your father is dying from jobs like that.