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Wolf-Hirschhorn Syndrome-Some FACTS

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Kids DO NOT usually die by the age of 2 years old. Yes, it can happen, but that is rare now. Most kids/adults with the syndrome live for well into their 30's, 40's and there is a lady in the US who is 62 years old. She is actually one of the first patients ever diagnosed. It is a chromosomal disorder which effects the short arm of chromosome 4. It is not caused by drugs, alcohol or poor eating throughout a pregnancy. It is not caused by poor parenting. For 80% of cases, it is something that has occurred spontaneously at conception and is not likely to happen ever again. In the remaining 20% of cases, one of the parents will have something called a balanced translocation. Without going into the genetics too much, it basically means that the parent has passed on the faulty gene at conception. This happened in our case. Something I had no idea of when I conceived Ryley. Seizures-85% of all children will have some sort of seizure activity. Most grow out of their seizures by the ag…
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RIP Charley dog

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My eyes blur with tears as I stare outside.
Part of me is silently urging her to find the light, the other is dreading the thought of her leaving.
I watch as slowly her eyes close.
Her breathing becomes laboured, it slows, her legs twitch every now and then.
I go out and reassure her.
I tell her that it is time.
I love you. I whisper.

In the background I can see the lemon tree.
Tall and wide and filled with lemons.
There is some new growth, but mostly there are few leaves.

Charley is a bit like that.
She has lost so much weight, she looks sparse.
She has fought to stay here with me.
But it is time, I tell her.
Find the rainbow.
And, one day, I will find you again-you know I will.

It is hard to say goodbye to someone who has been a part of your life for so long.
Nearly 13 years.
Longer than David.
Longer than my kids.

She was the one who protected me.
She listened to my rambling crying on the days I was at my lowest.
She was always happy to see me.

They say owners are like their dogs.
I…
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The Dream

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I know many of you already know what 'The Dream' is, and over the next couple of weeks, we can finally spill (most of) the beans.

A quick recap for those who have forgotten:
The Dream is basically an idea that has evolved over time as a solution to when Ryley finishes school.
My worry has always been that as soon as he turns 18 years old he will have nothing to do.
Sure, we have 2 options here.
One is a day program type environment.
The other is like a sheltered workshop type environment.
Neither of which I feel will necessarily suit Ryley.
Of course things may change in 8 years time.
But for us, we really felt we needed to create a future for Ryley, instead of just waiting to see what he might be able to do.

I actually have very little faith in the system at the moment too.
I have been discouraged recently at the way I have seen supposed carers treat the people they are caring for
(eg. Not changing someone's nappy for the whole day is just not friggin' on ok?).
I don&…
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