It is a year to the day that Anabelle was diagnosed with MPS1 Hurlers Syndrome and our journey began. So much had happened to our beautiful girl within in that year and she faced it all with a smile. From ERT to chemo, through the stem cell transplant and isolation. She has been and always will be an inspiration.

On our last blog we believed Anabelle died of septic stock and we were waiting on the post mortem results.  Sadley we are no further forward on this and we still do not know what finally took her from us as the post mortem report has not been completed yet.  Once this has been completed a date for  the inquest will be set.

Our little ones funeral was on the 18th January and it snowed heavily, we were worried about the turnout and although alot of people couldn't make it into town there was still a very good turn out. After the service white balloons with purple stars that everyone could write a private message on  were released within the grounds of the church. Our friends in Perth also released balloons at the same time, although their weather was a bit different to ours as you can see in the photos!!!

The cemetary looked extremely peaceful covered in snow and had a Narnia feel to it, we like to think that the snow was Anabelle's tribute to us.

There isn't a moment that goes by where she isn't in our thoughts and our lives will never be the same again. The message she left us was that we shouldn't get stressed about the small things in life as these generally have no consequence. She reminded us about the important things in life. The important things are family and friends and these should come before anything else.

On February 18th Anabelle would have been 2 years old, she had a lot of visitors and her grave looked very colourful

We would like to take the opportunity to thank everyone that has supported us, either through cards, facebook, text, in person, money sent via the funeral directors or the 'rembering anabelle' justgiving page.

Even though words cant describe the emotions we go through on a daily basis we are coping and still feel very strongly that the journey we all went through was the right one even though the end result was not something we expected at all.  The last few months with Anabelle, seeing her grow and develop will always be rememebered with a smile.  All MPS syndromes are horrific and this has changed our lives and will always remain very much apart of it.  In the next additon of the MPS magazine, Anabelle will be on the front cover and my tribute that I did for my baby girls funeral will also be in it. 

It is extremely painful to be writing this but the sad news is Anabelle past away on Christmas day. 145 days post transplant.  The pain is overwhelming and not a moment has gone by without the thought of desperately wanting her back. We are still at a loss and totally shocked by the suddenness of losing her.

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".
 

 

Our little angel.