Ella was a little girl enjoying life... She loved school, she loved her friends and family. She danced, she sang, and like many little girls, dreamt of one day appearing on Britain's got Talent or the X-Factor!
But not long after her 10th birthday her world was devastated. In March 2012, after a week or two of feeling unwell, despite calls to NHS direct and a visit to A+E two days earlier, where we were told there was nothing wrong other than a possible virus, we went to wake Ella on the morning of 5th March but she was unresponsive. We were terrified and called 999. An ambulance came and they quickly diagnosed that she was suffering paralysis and was rushed to hospital. A rapid scanned brought the devastating news that there was mass in her brain. An emergency operation was done to place a drain in her head as the pressure build up was threatening her life. She was then transferred to GOSH where she was kept sedated for two days until she underwent a 10 hour brain surgery to remove the lump. Our daughter woke after the operation and mercifully knew who we were.. She was still paralysed and her speech and language were also affected but we tried to stay strong and muster as much positive energy of a full recovery while we waited for the pathology report to come back - hoping all the time the lump would prove to be benign.
A week later our world crashed to the lowest level as we were told that our beautiful daughter had a very rare and highly agressive form of Brain Cancer - Gliobastoma Multiforme (GBM4).
We were warned that the tumour was deadly and even with treatment, there was very little chance of survival beyond a number of months.
Due to her physical difficulties and our home being unprepared for the needs of a suddenly disabled child, we were told by the doctors that Ella had to remain in hospital until she was ready to start a course of radiotherapy and chemotherapy and it was almost three months before she was finally able to come home. She responded well to treatment with the remaining tumour starting to shrink. Ella was incredibly brave and endured all the hospital visits, treatments and needles with grace and dignity at all times. She never complained and mostly always had a smile on her face.
She worked really hard at her physiotherapy and started to regain the use of her right leg with the aid of splint.. and slowly, slowly, movement in her arm started to come back. She also had to learn words and how to write and count again with the help of some lovely ladies who came regularly to our home.
As soon as she was home, we got Ella a puppy.. .she had always wanted to have a dog and Cookie quickly became a member of the family bringing joy and happiness to Ella.
She was joyful at being able to return to school in September and formed a very special bond with her one to one teachers.
She also enjoyed singing lessons at home - singing was her passion - in fact she once said Singing is my life! (We've attached a video of Ella singing set fire to the Rain by Adele!)
Despite a dismal prognosis, Ella was doing really well. She enjoyed her regular physiotherapy sessions and her walking continued to improve as was her speech and language. By her 11th birthday in February 2013, almost a year on, she was on really good form and went to the Harry Potter Studios and walked the entire exhibition with her special friends. We were very hopeful at this stage that Ella would be one of the lucky few children who defy the odds and would hopefully one day be in full remission.
We tried to do as many nice things as possible and she enjoyed a visit to Euro Disney in May, and also trip to our favourite spot in Spain. We were looking forward to going back in the summer holidays with her sister Maya and dad Al, and all our friends we usually see during our holidays.
Towards the end of the summer term, we noticed Ella's health declining a little. She was losing her spark. She was also being sick occassionally. We raised our concerns and eventually her doctors agreed to do an early MRI scan. Our worst fears were confirmed - the tumour was growing again.
We thought we would be able to have further surgery and new treatments as there was a vaccine trial newly available. OUr hopes were dashed when we were told that due to the direction the tumour was growing (into the brainstem and across the midline) that operating again would be impossible and would likely leave Ella without any speech or swallowing. Further Chemo would seem very unkind and was extremely unlikely to work since we had already had the best one and that had failed. We were advised to take Ella home and enjoy the time we had left.
Within a week she was unable to walk and was suffering vertigo and sickness as the tumour continued to grow. Clearly feeling very poorly, we tried to fill the summer holidays making happy memories with our precious daughter while we watched her slowly deteriorate.
Throughout her suffering, Ella remained cheerful and optimistic, enjoying visits from her family and friends, and even got to meet Dynamo the magician - a special moment. All those who knew and loved her constantly commented on how she was always smiling, and how inspiring she was.
Despite a truly courageous battle, she lost her fight on 7th September 2013. Our hearts were broken.
We want to make sure that Ella's memory lives on and that through her suffering other children who find themselves battling this disease will have a better chance of getting well again.
Just one last thing - a few days after Ella passed away, I found some little pebbles in her bag that had been given to her. One had the word Live, another Laugh and then there was a heart.. LIVE, LAUGH, LOVE... it's a motto we want to share as it so beautifully sums up what Ella, did and gave to the world during her all too short life - and its a wonderful way to remember her.
LIVE, LAUGH, LOVE ..... for Ella xxx
Thank you for your support.