Thomas (Tom)

















Bethany

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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.
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Charley is a bit like that.
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She has fought to stay here with me.
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Find the rainbow.
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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.

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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.
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