Florence’s family have shared an emotional update after a difficult few days, revealing that her blood sugar levels have been “all over the place” since she began using a Libre sensor.
Her parents explained that the readings may be linked to the steroids she needs to protect her new lungs. They said stopping the medication “isn’t an option”, but admitted the sudden blood sugar problems have been frightening, especially as Florence also has adrenal insufficiency.
After a hospital dash on Friday night and another scare on Saturday, Florence has had to endure repeated finger-prick tests. Yet her family said she has not complained once, simply holding out her hand, smiling bravely and carrying on.
They wrote: “Her strength never stops amazing us.”
Emotionally, Florence has also been struggling with isolation, missing friends, family and the everyday moments most children enjoy. Her family said they keep reminding her that the restrictions are temporary and are all about protecting her “precious new lungs”.
This week, Florence is due to visit Great Ormond Street, where doctors hope to find answers and help her feel more like herself again.
But in true Florence style, she is already looking ahead to a huge milestone. After years of treatment, setbacks and hospital stays, she has decided that the time is finally right to ring the bell — the day after her 10th birthday in Sheffield.
Her family added that, if doctors give the go-ahead, July could bring a double celebration: a 10th birthday party and an end-of-treatment party.
They said: “We’ve made a pact as a family that we’re going to live. We’re going to say yes to adventures, make memories, celebrate every milestone and stop waiting for ‘one day.’”
