18/09/2026
It’s world mitochondrial awareness week, the memories on my phone just spat out some photos from 5 years ago to the day when we were on the leukaemia ward at Manchester and Ruby was getting her 5th blood transfusion of the week. (Thanks for the blood 🩸🫶) I just feel so utterly grateful and relived that the last 5 years haven’t been full of time with a split family between home and hospital. It’s had its moments but nowhere near what we imagined when she got her diagnosis. Please take a minute to think about those mito kids who have that as their normal and say a little prayer. The worry is immense when the little people are ill. Also I’m so devastated by the loss of a couple of children in the mito community this year, it just seems so unfair and unlucky 💔 and I don’t understand why our journey isn’t similar given what she’s got.
This year, Ruby had a MRI scan on her brain in Feb, the results told us she has some ‘white matter’ which made me feel a bit icky. But then found out this would affect her balance which it doesn’t seem to so am just going to ignore it. It’s just a shame that the faulty mito has got a presence in there and will one day worsen. 😔
Ears and eyes are remaining good. 🥳 (Must try and show her more and play more music).
Endocrine; she had a growth hormone test where the results were as predicted.. poor, she needs to have another one to see if it’s worth giving growth hormones. But then if she was bigger we would struggle carrying her around 🤣😂. She has the adrenal insufficiency which taking medication for has been a game changer. No diabetes yet either or kidney/liver issues! 🎉
Appetite; keeps us on our toes…
Mito is horrendous, but one beautiful thing to come out of it is the ability for a mere hand squeeze from Ruby making you feel like you’re walking on air. It’s like when we saw the killers at the Grand Prix in Abu Dhabi. Total awe, wonder, euphoria and goosebumpy. I can get it daily from her on tap if I concentrate. 🙇♀️
My phone also slaps me with photos from the ‘before’; the worry free world, 🌍. I’m not going to lie, they make me feel sad. But the ying to the yang is the incredible photos since of a funny, happy little girl with incredible power, living in the most wonderful community.
