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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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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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Defeated...for now

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At the moment, I am just surviving.
I should have known it was only a matter of time before I fell over again and needed some help to get back up.
Stress.
Anxiety.
Exhaustion.
They seem to come hand in hand don't they?
And I should have really just taken a moment when I felt the stress building up.
I should have just said 'hey, I need a day or two to myself'.
But I didn't.
And here I am.

I am ok by the way.
Just in between sick kids, a sick me, work, a zillion extra appointments to somehow squeeze into my already full days...well...it all just became a bit much.
Cue: Me in tears sitting in my Managers office.
Thank goodness I have a supportive and wonderful workplace.
She saw I needed time out and told me to take it.

The worst bit of it all is the stupid anxiety that came back.
For those that suffer from anxiety (whether it be a sometimes thing like me, or an ongoing disorder), it truly sucks the life out of you.
My body just completely went into adrenaline overload.
F…
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