European Fragile X Awareness Day 2014

It’s that time of year when the Fragile X community bombard your time lines with facts and figures about Fragile X.

Whenever conditions like Fragile X get discussed it’s almost always the negatives that will get dwelt on the most, speech delay, anxiety, autistic tendencies, physical appearance, not being toilet trained at 10. Positives generally amount to “but he/she is lovely though”

This year  we are doing things a little differently, using the hashtag #fragileXtraordinary we are celebrating the all the achievements our Xtraordinary kids have made.

Be it talking for the first time aged 4, learning to buckle their own seatbelts, overcoming anxiety to visit major sporting events, dressing themselves or just generally making us laugh, today is all about the positives.

Finding out your child has Fragile X can turn your life upside down. No one seems to know much about it, they tell you all the things that could happen but they don’t know if they will.

What they don’t tell you is how determined, intelligent, funny, loving, helpful and charming your child will be.

They tell you your child might not be talking at aged 5… they don’t tell you that at 7 they will be proper little chatterboxes and improving all the while.

They tell you your child has hypermobility and will need special boots.. they don’t tell you the boots are extremely cool, come in colours such as hot pink and the kids at playgroup will want them too. Plus the various contortions they manage to put themselves into will astound you.

They tell you your child may have autistic tendencies.. but that is not the same as being autistic. A child with Fragile X will avoid eye contact with people they don’t know, but you can bet they are sneaking a peak at that person once their back is turned..

Have you ever watched the film “Mission to Lars”? it is about a man called Tom Spicer who has Fragile X and an obsession with meeting Lars Ulrich the drummer of metal band Metallica. His brother and sister take him on a road trip across the US in order to make his dream come true.

One of the most uplifting films I have ever seen it is a great example of what someone with Fragile X can do with support and determination.

So let’s celebrate our Xtraordinary children be they big or small and hopefully make more folks aware of Fragile X!








One thought on “European Fragile X Awareness Day 2014

  1. vswamp27

    Because of you I did watch “Mission to Lars” Which definitely showed how much a person with Fragile X can accomplish. You work so hard with/for your children I feel they will far surpass what is a “may be” “may do”. Plus you have done a lot to explain “Fragile X” You deserve a ;lot of praise for that. xxx’s to you.

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