About

Follow along with us as we learn how to cope with a newborn baby with Glycogen Storage Disease.

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4 responses to “About

  1. Lovely to read everything in so much detail, we’re really interested to hear about your journey as well as concerned to know you’re ok.

    Make sure you tell us lots about Ronald McDonald House because it’s a charity you hear a lot of advertising for, but I will want to know whether it’s a place I should be giving more money to!

    Good luck.

  2. Hi Fenn.

    Definitely we think that Ronald McDonald house is fantastic now! We’ll be supporting them from now on.

    Basically it’s costing us $5/night for a clean safe house, space to cook, shower, chill out and watch foxtel, use the internet, etc. It’s well set up to cater for entire families and for people staying for extended periods of time.

    It’s hard to get a room here though, you go onto a wait list, which should tell you that there is far more demand than they can meet.

    The wait list also goes by how severe your situation is, if you have a child with cancer, in the ICU or needing major surgery, you get preference on the list.

    When you have a sick child, worrying about accommodation, getting there, etc is all a lot to deal with, especially if it’s melbourne during the racing carnival, and there are not hotel rooms free near the RCH!

  3. Journey of a darling little girl born to parents who have developed a coping strategy by recording their daily experiences, private thoughts and worries and who have chosen optimism and knowledge as a way of life to renew their faith and deal with the challenges of caring for Alyssa.To share your life is indeed extraordinary and keeps worried interstate relatives informed and relieved.

  4. So glad you found us here Aunty Carol 🙂 It does help us a lot, it’s definitely helping friends and family understand what’s going on and one day, and most importantly, it will help Alyssa to come to an understanding of how she began and where she is going.

    I’ll write to you soon – we have had you in our thoughts 🙂

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