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. |
Devasting, shocking and unbelievably sad news. Well done lee for composing this update because I no how hard this must have been to write. Anabelle was a beautiful happy little girl who endured so much in her short life which she didn't deserve. By your own admittance , her strength got you through the battles she faced and if she were here now she would get you through this tremendously difficult time again. I will always remember her infectious smile and loveable cuddles. As I've always said, your courage has been inspirational. You were amazing parents to Anabelle and she knew how much you loved her. U could see it in her eyes. i think we would all agree she was very lucky to have you as parents as much as you were blessed to have her in your life, even if you were robbed of time. I hope that somehow time helps in the pain you are both feeling. Lots of love always , louise, andy and Molly xxxxxx
ReplyDeleteFor beautiful Anabelle who will live in my heart forever.
ReplyDeleteWe never met but we have been following your journey, and are heartbroken to hear the news. We are truly lost for words. You are in our thoughts every day. We just want you to know that you have given us strength. We read your blog and everyone we met here had wonderful things to say about Anabelle and her amazing parents.
ReplyDeleteAnabelle you will always hold a special place in our hearts. Without knowing it you touched our lives and helped another little hurler's girl and her parents through tough times.
Chloe's mum and dad. ( Bmt + 87 curently on fox ward
I can’t express how sorry we are to hear your devastating news.
ReplyDeleteAlthough I didn’t have the pleasure of meeting Anabelle in person we have followed her journey through your blog and her Auntie Sally. Your strength as her parents and family is truly inspirational and I’m sure Anabelle loved the precious time she had with you.
Thinking of you all .
Sam, Tony and Ellie May xxx
Words can't express how sorry we were to hear about Anabelle. Although we never met her we have followed her story from her early arrival and 'bunking' with Aisha in the NICU at QA, to her battle through the BMT and beyond on this blog. She always seemed like such a happy and loving girl, and such a brave fighter. May she travel with you always, In your hearts.
ReplyDeleteOur thought are with you.
Jenny, Darren and Aisha XxX
Deepest sympathys to you all. Have been following the blog. (Friends with sasha)An amazing little girl with the biggest smile. Such an inspiration!! We have only ever heard about your hard work and pure love and commitment and what a beautiful little girl she is.
ReplyDeleteThinking of you all
Natalie an family xxx
My heart aches in sadness, I wish you all strength and love knowing heaven has gained a beautiful angel.
ReplyDeleteAnabelles smile will remain in our hearts forever, she is truly blessed to have amazing loving parent like you both.
My thoughts and prayers are with you all x
Love Lisa x
Thinking of you at this heart breaking time. I do not know you, nor did I have the privilege of knowing your baby girl, but she touched my heart. I hope these words help.
ReplyDeleteDo not judge a song by its duration
Nor by the number of its notes
Judge it by the richness of its contents
Sometimes those unfinished songs
Are among the most poignant
So judge it by the way it touches and lifts the soul
Sometimes those unfinished songs are among the most beautiful
And when something has enriched your life
And when it’s melody lingers on in your heart
It is never unfinished
But endless (author unknown)
A friend of Aunt Sal xxx
Leanne and Lee words cannot express how sorry I am to hear your devastating news. I never had the pleasure of meeting your beautiful little angel but the pictures and videos you have shown me are amazing and I will always remember.
ReplyDeleteMy thoughts and prayers are with you and your familes, I can't begin to imagine your pain, heaven has gained an angel.
All my thoughts are with you xxx
Sam (Swindon store)