Elizabeth’s Story

Elizabeth Tamara Angelique or Cutie Beauty
At the beginning of 29th May 2010 I heard two of the most amazing words in my entire life – ‘It’s a girl!’

She arrived into this world with the speed of ‘Rainbow Dash’ – her favourite ‘My Little Pony’ character. I know this analogy would very much please her and make her laugh with great joy.

She was supposed to be called Elizabeth Tamara. We had prepared her name two months in advance even though we had decided not to know which gender our baby was. Yet, when she was born – we looked at her and we clearly understood we had an angel in our hands. So we went through the list of ‘angel’s’ names and that was how she became Elizabeth Tamara Angelique.

She was such a beautiful, perfectly healthy, strong and ambitious baby. She tried to hold her head in the very first hours of her appearance, which really surprised our experienced midwife. Although so tiny, she showed us incredible inner strength and was hungry for life in the same way that she was hungry for milk and for mummy cuddles. It seemed she knew that she had got only 5 years to live and she was determined to make the most out of every single minute.

Elizabeth’s personality

Elizabeth grew up as a confident, extremely outgoing and energetic little girl with an inquisitive, creative mind and a very kind and friendly personality. She was always laughing. Always happy. Always wanting to learn more and to see more. A cheeky and funny little chatterbox, she was our joyful ‘ball of energy’, constantly chatting and bouncing around all day long in a search of some lovely adventure. So much so that people would often ask me how I keep up with her!

She was a very special, innocent child. Beautiful inside and out.
She was the epitome of life.

Elizabeth’s interests

There could never be enough activities in Elizabeth’s day. Oh, she was such a big fan of adventures! Literally, she would wake up in the morning and the first thing she would enthusiastically ask me was ‘Where are we going today Mummy?’. And straight away we would start to plan some exiting adventures. Then it would just be the simple matter of getting dressed up, choosing a soft toy buddy and stepping outside the door.
You could spot us travelling all over the country visiting museums and exhibitions; theatre shows and cinema; wildlife parks and zoos; local festivals and National Trust sites; sport camps, cooking and craft classes; walking in the hills and playing on the seaside … You name it – and she was up for it!

She performed on a real stage, tried on an astronaut suit, made pottery, did Kintsugi Japanese craft, and even made an animated film about Wallace and Gromit! She took it all in with her beautiful blue eyes was never ever tired. Whatever we did, she never complained so long as she was out.

She wanted to pack her life with so many activities and our only worry was where to find the time to learn everything she wanted to. She had such a bright optimistic life ahead of her and so many dreams and plans for the future.

Elizabeth’s real passion was animals. She adored them and wanted to grow up to become a zookeeper because she said ‘Then I could stroke all different animals any time I want to’. She never missed an opportunity to crouch down and try to touch a passing cat or dog or any other accessible animal, even scary looking insects! Not surprisingly, she dreamt of having a real tiger for her pet.

School days

When Elizabeth started school, she enjoyed it so much that she was upset when it was the holidays! “Mummy, mummy, mummy…” she would excitedly shout, running into my arms at the end of the day and telling me all about the wonderful time she had reading, drawing and playing with the other children.

Once she mastered reading skills, she became a massive book-lover and wanted to read every single story from our local library. Her favourite authors were Tracey Corderoy and Julia Donaldson. She was so thrilled to meet them both in real life and to get her books signed.

Elizabeth with children’s author, Tracey Corderoy

Elizabeth loved the theatre and attended ‘Cameo Kids’ during term time and ‘My Stage School’ during the summer holidays. She took part in their ‘Lion King’ show and was photographed for the local newspaper.

She loved stage but especially loved dancing. At the age of 4, Elizabeth joined ballet classes at the Corraine Collins Dance School and was very proud to perform in a few shows at the Bacon Theatre in Cheltenham. She was going to learn proper ballet for many years to come and she practiced so hard to be a graceful ballerina. She was really looking forward for her first ever exam which would have been on the 21st of December 2015.

However, in just one day, our life was to change forever, and instead of the ballet exam it was her funeral…

Our last happy day

On Saturday 21 November we had a normal day.

Although Elizabeth had developed symptoms of a mild cold, she wanted to go out and have fun as usual. She asked to be taken to Bristol Museum where we often went as she enjoyed looking at all of the stuffed animals, fossils, minerals and other exhibits.

Later on, we went to the ‘Winter Wonderland’ at Cribbs Causeway and she had an early festive treat visiting Father Christmas. Elizabeth asked for a real cat as she was desperate to have a pet, but she got a soft toy reindeer.

She did not know that I planned to give her a real pet as a Christmas present.

That evening, she developed flu-like symptoms but it didn’t appear serious. She had a small dinner and afterwards we were cuddling and watching ‘Charlie and the Chocolate Factory’ which she chose that day as an extra treat.

Then she went to sleep.

During the night I kept an eye on her and regularly checked her temperature. She was unwell but at that point there was no reason to call the doctors.

By midnight her temperature went really high but the paracetamol still helped to keep it under reasonable control. Then she made me worry because at 2 am she developed a soft but very unusual cough which would bother her every few minutes for the following two hours. After that, she had a good sleep.

However, on the morning of Sunday 22 November it was clear that she had deteriorated and urgently needed to see a doctor. She woke up at 6.30 am. ‘It is morning, mummy.’ she said and went to the toilet as she would normally do but when she came back, she never spoke to me again.

She just lay down and silently looked at me and I realised she was having difficulty breathing. Her Dad arrived and we booked an urgent appointment with the local hospital. Then I dressed Elizabeth in her favourite onesie and carried her to the car. By this time she was totally unresponsive.

Walking out of the flat, I believed that we would be back home in half an hour to carry on with our daily life. Little did I know that morning that when I closed my door, I had left my normal and happy life behind and entered a horrific nightmare which would change my life forever.

Elizabeth’s Illness

We took Elizabeth to Cheltenham A&E at 8:45am and doctors quickly confirmed by X-ray that she had acute pneumonia. This was a shock to us but the doctors gave her antibiotics and an oxygen mask and persuaded us that everything was under control.

A precautionary move in an ambulance from Cheltenham A&E to Gloucester Hospital with a doctor on-board was followed by a further deterioration in Elizabeth’s condition, and within a short while she was in intensive care.

Her condition continued to worsen to the point that she could no longer breathe and she was put into an induced coma and on to a ventilator and an emergency team from the Paediatric Intensive Care Unit at Bristol’s Children’s Hospital were called.

When they arrived Elizabeth’s condition was so serious and she was deteriorating so quickly, the doctors had to intervene with every possible medication to enable her to make the journey to Bristol. At some point the lady doctor in charge of the team told us that Elizabeth’s condition was extremely critical and it was most likely she would not ‘make it through’ but they would continue to do everything they could to save our daughter.

That was the first time we realised that things were getting really desperate – our beautiful daughter’s life was slipping away. Elizabeth’s dad’s family members arrived to support us and in total despair I asked all of my friends and their friends on Facebook to pray for Elizabeth’s life.

Elizabeth was not expected to survive the journey in the ambulance to Bristol, but she did. Many hours passed with frantic activity by doctors and nurses trying to stabilise her. Subsequently, we were told that her condition was likely to be HLH (hemophagocytic lymphohistiocytosis), a very rare condition.

It meant that her body’s own immune system had effectively attacked itself, sending her into severe septic shock, destroying her organs in the process.  She was so ill that her body had shut down everything apart from her heart and brain, cutting off the blood supply to other organs and her limbs, with dreadful consequences.

Bristol Children’s Hospital Special Care Unit

For 18 days and nights we watched Elizabeth extraordinarily fighting her very best to remain alive. It was unbearable torture for all of us.

I felt completely helpless. Every mother worries when a child gets even a little scratch or a minor injury…and I was no different, worrying even when Elizabeth had a small scratch or a red spot on her body. But I could never imagine seeing my child in such a horrific and extremely critical state.

I had never been in an intensive care unit before. I was totally overwhelmed by the amount of machinery I saw. Elizabeth was supported by almost every single available life-saving equipment from the very first day and to the very last. It soon became obvious to me that this level of intervention was abnormal, even in intensive care.

Initially Elizabeth had conventional ventilation to support her lungs, but she couldn’t tolerate this, needing more support, and so was moved on to high-frequency ventilation. This was incredibly upsetting due to the noise it created and the extreme vibrations that her body endured day after day.

Due to her kidney failure she was supported by dialysis, a blood filtering machine. She was also on a cocktail of drugs, including those for her heart. Some of those drugs were non-standard, and therefore hugely expensive. The hospital gained special funding which allowed them to keep supporting her. There was a constant stream of specialists and consultants, all desperate to save her.

The doctors and nurses showed incredible care, love and compassion, they worked relentlessly and were outstanding. They showed unbelievable devotion, often working at great intensity for 12 hours without being able to even sit down.

Sadly, even the very best care could not save her life – and Elizabeth lost her brave battle on the evening of the 10th December 2015.

The machines were turned off and a kind nurse Tracey, who had been in the original rescue team sent to Gloucester, carefully removed the many cannulas and tubes from her little body, and then helped me to wash Elizabeth’s hair for the very final time…

 

mum

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