I’m not sure if you have been following along with all the hospital stays Willow has had over the last six months.
We still don’t have an exact diagnosis but that doesn’t matter as we know what is going on and it’s called global brain atrophy. Basically it’s the loss of brain cells called neurons. Atrophy also destroys the connections that help the cells communicate.
She won’t be getting better. All the hard work and progress she has made with her original diagnoses when she was little. We are watching it all waste away.
Her walking is going, her speech is declining. Dysphagia diet now. Her memory is all over the place.
We have some best case and worst case timelines and some more tests to do to narrow those down.
Nothing is going to make her better.
It’s all about quality of life now and making memories.
Arghh it’s hard to even write that. I currently keep thinking I’m in a bad dream. It doesn’t feel real yet.
I’m trying to make some plans before it really hits home and I can’t think.
We don’t have time to waste.
First goal is that we need an electric wheelchair and a wheelchair accessible car. VW Caddy is the ideal car as not too big.
In the new year Steve and I are going to do some fundraising.
A Bogan Bingo Event
Not sure what else
So many people have offered to do fundraisers in the past and I’ve said no.
But now please go for it as I said we don’t have time to stuff about.
The only thing I beg of you is to not use language like “poor child” or anything that makes her seem sad and pathetic.
She is the strongest, bravest little girl ever and she never complains or plays the poor me card. This is fucked and unfair but we need to handle it with as much bravery and grace as she does.
This gofundme is for anything you can raise as I feel that’s the easiest.
- Brian Hinge and Family
- Peter Olle
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