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Completely broken

Community Member

Hi all,

I have just had my first child, he’s amazing and I’ve never loved anything more! We just received a completely unexpected diagnosis of an extremely rare genetic condition that is terminal and life expectancy is less than 10 years. I’m not coping. I got a mental health care plan from my GP and am seeing a psychologist which isn’t helping yet. I don’t have a big support network, it’s just my mum and my husband. It’s taking its toll on my relationship. I’m having massive breakdowns every few days. I don’t know what to do, I can’t do this 

2 Replies 2

Eagle Ray
Valued Contributor
Valued Contributor

Dear Wilted Rose,


 I am so sorry you are going through this. It is so good you are reaching out for help. It would be one of the hardest things anyone could face. I think keeping in contact with any supports available would be really good. Also, connecting with other parents/families facing a similar situation who are going to understand what you are going through. There will be some families who are further down the track in terms of dealing with a similar diagnosis and may have ideas about adjusting to dealing with this news and ways of managing things. I just had a look at what possible supports there may be and came across the charity TLC for kids at tlcforkids.org.au You have probably looked into a lot of these things already. It may be that a place like that can put you in contact with additional supports as well.


 I think just expressing your feelings and emotions can help to at least not be internalising them. I’m sure you, your husband and Mum are all struggling emotionally and there would be shock to process right now too. I hope this is something the psychologist can help you work through. I think be as gentle with yourself as you can at this vulnerable time.


It is ok to write out how you feel any time so post here whenever you need to. We are here if you need to chat or just say how you are feeling. Sending you kindness and support.

Valued Contributor
Valued Contributor

I am so sorry that you are experiencing this. I cannot imagine how painful and distressing this must feel, words can't really describe it. To have the joy of a first newborn followed by such gut-wrenching news seems so cruel. Relationships can understandably become strained in experiences like this and when you're struggling to cope. Taking it day by day, or even hour by hour if you need is important, as is giving yourself the space and time you need to grieve and process the news. Spend time connecting with people that you trust and feel that you can be open with as well. And if it feels like something you are open to, maybe finding some support from those who are going through a similar experience - Genetic Alliance Australia (https://www.geneticalliance.org.au/index.php) has some support services that you may want to look through and access when you feel ready.  

I hope that despite everything you are still able to have moments of joy with your new son - it sounds like he is dearly loved. Please be kind to yourself and as Eagle Ray mentioned, please do not hesitate to reach out on these forums as and when you feel up to it. We are always here to listen. Take care.