Author Archives: elizabethhalford

Blowing Chunks – What a crap way to wake up

It’s becoming a 5am date for Grace and I. I stumble to her room out of a dead sleep, woken by her desperate plea for someone to pleeeeeease come save her. And before I even open the door, I can smell the vomit. Why does it happen at 5am? I have no idea. It’s been...

The Science of R168X

If you remember back a few months ago, we found that Grace has the Rett mutation known as R168X. Gracie’s friend Amy also has this mutation and her mom is such an articulate writer and keeps a wonderful blog about their lives with RS. Anyway, she had a particularly interesting post today about Amy &...

The loss of a dear friend

You may remember last month the post about our friend who shaved her head to raise money for Rett Syndrome research. She passed away after a very short time of pain and suffering from cancer. Her funeral is on Friday. Thank you Elaine. I really can’t believe you’re gone. I don’t think I’ve really even...

The Aftermath – A 'shear' £376 raised!

Wow what a touching day we had yesterday. Last week, I posted to explain how our friend, Elaine, who has cancer and will begin radiotherapy this week, decided to lose her hair on her own terms and raise money for Rett Syndrome in the process. Leading up to the ‘shearing’ party, The News ran an...

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