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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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.
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Sure, we have 2 options here.
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I actually have very little faith in the system at the moment too.
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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?
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I am ok by the way.
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Thank goodness I have a supportive and wonderful workplace.
She saw I needed time out and told me to take it.

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