This site is provided both as a memorial to infant sufferers of Type 2 neuronopathic Gauchers Disease, and as support to the parents who have had to live (and cope) with caring for a dying baby. In particular, it is aimed at affected families who live in Australia and New Zealand.

It is our wish that anyone, no matter where they might live, will find the material here helpful in understanding the plight of these children... particularly if they currently find themselves caring for, and loving deeply, a child that has been diagnosed with this terrible disease.

The most difficult thing a parent can face, is being told that 'your baby is going to die'. As well as having to live with the inevitability of such a fact, there is also the nightmare of watching the suffering your baby goes through, and realising that there is nothing you can do about it. The rate of occurrence of such a disease in Australia is miniscule compared to diseases like cancer... but with cancer, there is always the hope of successful treatment and remission. Currently with Type 2 Gauchers Disease, there is no hope at all.

  • The 'About' section gives a little background detail regarding the disease and what it does to a small child.
  • The 'Resources' section lists links to websites related to Type 2 Gauchers Disease.
  • Finally, 'The Children' are exactly that: incredibly brave little boys and girls whose lives were painfully short, yet incredibly meaningful.

If you are a parent of a Gauchers baby, or know of someone who is, or would simply like to know more from people who have dealt first hand with caring for one of these special children, then feel free to email me. Please place the word [gaucher] in the subject line to avoid being discarded with any spam.

This website was born on the 30th November 2003
It looks great at a desktop setting of 1024 x 768 pixels!


Last modified:
13th November 2004


Happy 2nd Birthday Brannon! This site has been ignored for a while, but with a new website home (thanks to a change from dial up to broadband) I've added a few little tweaks here and there. Some extra details and a few extra links were added to the 'Resources' section.

Additionally, the news from March this year mentioned that there may have been one other case of Gauchers in Australia: this turned out to be incorrect, as the specialist I was in contact with was referring to Elsie's family in New Zealand. Hence there is only one known case of Type 2 Gauchers in Australia, and in New Zealand. Here is to hoping that there will never be others...

Older News:

7th March 2004

  • In my discussions with others, it seems that there has only been one other recorded case of Type 2 Gauchers in Australia since the mid 1990s. Added to this, I am aware of one family in New Zealand who has been told that they are the only known case of Type 2 Gauchers in that country. It seems my ambition to record many other stories of Gaucher babies will be restricted to perhaps only one: our son. I am still in the process of trying to get in touch with the other family in Australia, and I don't know whether the family in New Zealand would wish to delve again into the emotions surrounding their own loss. In a way, this is good news that Type 2 Gauchers is just so rare in this country. There may well have been other cases that have gone undiagnosed, but we just don't know enough about it yet.

28th January 2004
  • Made the page summaries in the introduction above as url links: clicking on them now will take you to that page. The bold type was confusing some people.
3rd December 2003
  • Added diagram to genetics explanation in 'About'
  • Added a 'Caring for Brannon' section to Brannon's pages; included image and text (incomplete)
  • Fixed some typos, adjusted some formatting

  

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