So when we were planning a trip to Canberra with our children, a visit to the Australian War Memorial was high on our list of priorities. We saw it as an opportunity to give them some sort of understanding as to what has happened in the past and how important remembering is, to honour the lives of those who were lost and to ensure we work hard not to let anything so terrible happen again.

As it turned out, the War Memorial was running special tours designed particularly for children at the time we were in Canberra.

I was SO impressed with the way the War Memorial was run. I believe most of the staff are actually volunteers. The attention to detail they gave and the overall service and information was second to none. The kids were fussed over and treated very well and what they learnt through the entire experience was fabulous.

We were able to take them into the Discovery Zone where they were really able to get hands on and do things like sit in the cockpit of a helicopter, search for mines, get inside a submarine and see what trench foot looks like.

By far, the most significant part of the whole experience though was a visit to the tomb of the unknown soldier. I was stunned by how this group of children, some of them quite young, were very solemn and quiet during the minutes silence we had. It was a very special and poignant moment.

If you’ve never been to the Australian War Memorial, I can highly recommend it as a place suitable for all ages. I’m so thankful to all the wonderful volunteers who work hard to keep the place running smoothly and making it a worthwhile experience for all.

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Everywhere I looked I saw a fire hazard. Thick mulch on the gardens. Fire hazard. Trees growing snugly against a house. Fire hazard. Woodpile. Fire hazard. Timber fence. Fire hazard.

I saw windy picturesque roads that would be difficult to negotiate in low visibility with fire trucks screaming past.

I’ve seen Scorched.

No, despite the undisputed beauty of the place, I couldn’t imagine living in summer in the hills.

Apart from anything else I confess to a little household laziness.

The gutters on my house have more flowering plants than my garden.

You need to be prepared for fires.

How do I know this?

I’ve just read Ian Mannix’s Great Australian Bushfire Stories. Now before I go on, let me make a disclaimer, I know Ian well. A respected ex foreign correspondent, Ian is passionate about emergency communication. Beyond passionate.

Anyway over a few drinks one night he told me about some of the stories he was collecting for his book and they were extraordinary, so when his book came out I was prepared to give it a go.

I didn’t have particularly high expectations. It’s his first book and how interesting can a collection of bushfire stories be?

After all it’s all much of a muchness isn’t it? Fire comes along. You stay or you go. If you stay you fight the fire. And I’d heard what I thought must be the best of the stories anyway.

Wrong.

First of all the fires are different, they act in strange ways, they don’t do what they are supposed to.

Secondly and most interestingly the human reaction is so different.

These are ordinary people doing amazing things. As Ian says in his book:

None of the people in this book believes their actions were perfect, none believes they were acting heroically. They just confronted the difficulties in the best way they knew how, and they wanted to keep their families safe.

And the stories are inspiring.

A man shelters under a blanket – a blanket! – in his vegetable patch and survives.

Another family run to the sea – you can see the video here – metres in front of the flames.

You get the feeling that while everyone in the book survived physically – there is still a lot of emotional trauma to be dealt with.

The whole glass back door was being smashed repeatedly by large sticks and debris, which were alight. Some of the sticks were massive. The fire was chucking everything at us. We all thought the door would break and the fire would get inside.

The wind grew louder and extremely strong. It tore a hundred-year-old gum tree out of the ground by its roots and laid it on its side. There were massive gum trees all around the area toppled over by the wind. Their tops were twisted out and tossed on the ground. Then everything went black.

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• Did you know that Fragile X is the most common genetic cause of intellectual disability and one of the most common single gene disorders? Latest figures from USA indicate that Fragile X affects more than 100,000 Americans and another million are carriers of the Syndrome.
• Are you aware that about one in 256 women and around 1 in 6000 men are carriers of the Syndrome and that carriers have their own distinct medical issues? Female carriers have a 50/50 chance of passing the condition on to their children; males will pass it on to all of their daughters.
• Did you realize that it is the most common known cause of Autism? For between 2% and 6% of all children diagnosed with autism, the cause is the Fragile X gene mutation? About 20% of children with Fragile X meet the full criteria for Autism.
• Would you be surprised to learn that girls with Fragile X Syndrome may not be classed as intellectually disabled but may just struggle a little with school, be shy and suffer from anxiety?
• Did you notice that many of the statistics quoted above were vague as, until the Syndrome becomes better known and many more carriers and their affected children are identified, they cannot be more specific? Many children and adults are misdiagnosed or the reason for their problems not found. These people are missing out on the correct therapies and medical treatment.

Fragile X is caused by a fault on the X chromosome which means that a particular genetic protein is not produced or not produced in enough quantity. It is thought that this protein is a controlling mechanism for other proteins; when it is lacking it leads to an excess of the others. For those affected there is a wide range of possible symptoms which tend to come in varying degrees of severity. In addition to intellectual challenges, ranging from subtle learning difficulties to severe intellectual disability, there are cognitive medical, physical, behavioural, psychological, sensory, social and speech problems. What a tangled web it weaves:

Carriers have a small defect in the Fragile X gene which is not enough to produce the symptoms of those fully affected. They are however prone to their own distinct problems:

Many older carrier males suffer from a condition called Fragile X-Associated Tremor/Ataxia syndrome (FXTAS) which, because of the similar symptoms of tremor, balance and memory problems, can be mistakenly diagnosed as Parkinson’s disease.

For women there is Fragile X Associated Primary Ovarian Insufficiency (FXPOI) a condition that can result in premature menopause for women, sometimes as early as late teens.

If you wish to find out more:

• Head over to the Fragile X Association of Australia site – Just between you and me the site will have a brand new look along with a blog and forums very shortly: to go along with the organizations new status as a National Organisation. I have given you a peak of the new logo at the top of this post. I am busy working on the site and it should be ready within a week or so.
• An article was recently published by Time Magazine which gives a good overview of Fragile X.
• I have started a Fragile X group on YouTube to gather together Fragile X videos made by professionals and parents of people with Fragile X Syndrome. The 10 minute video Fragile X – Hitting the Mark by Katie Klapp of the Fragile X Research Organisation is very comprehensive and Fragile X a Family’s Story clearly shows how the Fragile X gene can be passed down through the generations before it emerges as a full mutation.

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I think we should remember them every day as we bask in the freedom they have afforded this fantastic country that we proudly call home.
These are the people who have earned the right, in the harshest way imaginable, to be called heroes

They shall grow not old
As we that are left grow old
Age shall not weary them
Not the years condemn
At the going down of the sun, and in the morning
We will remember them
Lest we forget

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