On Thursday evening I heard Star crying in the bathroom. She couldn’t pee again. We were told that if it happened we had to take her to the hospital A&E straight away, so we did. When we got there about 9.40pm it was really full, even more than the last time. Star started to panic…
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My Sunday Snapshot – The Halo
I’m a bit late, yesterday was Rare Disease Day 2020 and I wanted to do a post. We have lots of rare to share! Instead, I’ve decided to show you my brave little girl back in 2014 in the halo. Star had to wear the halo twice, for three months at a time. She has…
Zebra Child of a Zebra Mum
I have to admit, my daughter, Star, has been a zebra longer than me. A medical zebra I mean, someone who suffers from a rare condition. The problem with rare conditions is that Doctors tend to look past them and blame something else. They are looking for horses, not zebras. Star’s problems started when she…
Word of the Week – Star
On Monday, Star was sent home from school. She didn’t go in on Tuesday and just lay on the sofa all day. Then on Wednesday she had a hospital appointment that she really couldn’t miss. So Wednesday morning.we set off to the hospital only to find her consultant was running late. We had to wait…
Star – Word of the Week
It’s been a strange week, I don’t feel as though I’ve done much yet a lot has been achieved. I’ve chosen Star as the word of the week because a lot of the week has been about her. On Monday and Tuesday Star went to her new secondary school. She stayed all day both days…
