We were only at day clinic at Great Ormond Street on Wednesday 19th December and the feedback then was how well she was doing. Her levels were good, her ciclosporin was being reduced and by 9th January Anabelle would have only been on two meds - Penicillin (which she would have been on for life) and Aclovir for a year. We discussed Anabelle' Hickman line and had planned for this to come out by the beginning of February.
We also discussed long term prognosis and how she would live a pretty much normal life.
Anabelle was starting to say a few words, bye bye, hiya. Her makaton sign language was very good and she was walking holding only one hand.
On Sunday 23rd December she woke up out of sorts and wasn't really herself, but had no temperature. As per protocol we phoned GOSH who advised us to take her to our local hospital,who were aware of her condition.
Anabelle didn't get put on IV antibiotics until 36hrs after we took her to hospital, they gave them orally which she vomited as she hadn't eaten for 14hrs.
Early hours Christmas morning Anabelle had a seizure and was eventually rushed to Southampton General Hospital on Christmas morning. After 12 hours the infection had spread and had started to attack her organs and she sadly past away at 2.40pm from septic shock.
We are currently waiting for the results of the postmortem as we would like to know the name of the infection that killed her as well as other questions we need answering.
The news is devastating but we don't regret our decision to go through the journey we have shared with you. BMT gave Anabelle hope for a normal (ish) life and we have shared many many good time since she got diagnosed with Hurlers .
Anabelle was the most happiest, loving little girl with the biggest smile and we are very proud to have been her parents, she was our little angel, our shinning star and we will love & miss her everyday.
"Even the smallest of feet have the power to leave everlasting footprints upon this world".
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| Our little angel. |
