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Ella Robinson - PBT (Support for family)
£10,440 Raised
135 contributors
2 Years running
At the end of October last year, our little girl Ella Grace (7 years) was diagnosed with Scoliosis (30 degree curvature of the spine), we were told at that same appointment that Ella would have to wear a Boston Body brace for 20 hours a day for ... More ...

At the end of October last year, our little girl Ella Grace (7 years) was diagnosed with Scoliosis (30 degree curvature of the spine), we were told at that same appointment that Ella would have to wear a Boston Body brace for 20 hours a day for approximately 8 years and would more than likely have to have spinal surgery in her teens to correct the curvature. Obviously this hit us as like a tonne of bricks and even though we knew she had some problems with her body the diagnosis and treatment was far worse than what we expected. Little did we know that this was nothing compared to what was ahead.  

As part of Ella's treatment she had an MRI Scan at 5:30pm on a Thursday evening, this was to rule out any Neurological problems in relation to the Scoliosis.  At about 1:00pm the next day we received a call from the hospital informing us that they had a found swelling on Ella's spinal cord that had nothing to do with the Scoliosis.  We don't need to tell you what that did, were our thoughts naturally went to, the questions we started asking and the worry we felt as we waited over the weekend to meet with the Neurosurgery Consultant at Alder Hey, Children's Hospital. We met with the consultant and we were told that Ella had a tumour on her spinal cord and that she was booked in the following week for surgery to attempt to remove it. The hospital were surprised that Ella was not showing any symptoms as the tumour was located at the point of the spinal cord that sends messages to the bladder, sphincter functions and leg functions.  

The following week Ella had a 9 hour operation and the surgeon was able to remove a significant amount of the tumour, however a large part of the tumour is infused into the spinal cord so safe separation was impossible.  After the operation Ella lost the use of her legs, especially her left leg, however over time those functions have returned and she is making good progress and is walking again albeit not perfectly.  

The histology report came back with the tumour as benign which was fantastic news, however we were told that it was still growing and without treatment Ella would at some point lose her bladder, sphincter and leg functions.   The next course of treatment for Ella is Proton Beam Therapy (PBT), this is targeted radiotherapy that minimises damage to good cells as it deals with the tumour (sorry for my simple understanding and explanation). This treatment is only available in the USA, so the NHS will be paying for Ella’s treatment, and for the two of us to be there with her for a minimum of 7 weeks.  

The reason why we are seeking to raise funds is many people have asked if they can help us as a family financially, so we have set up a short campaign for people to help with our travel and expenses.  We have three other children (Lilly Hope, Elijah Boaz and Joshua Ezra) who are all under 6 and naturally we don't want to be apart from them for this length of time so in light of this we need to pay for the flights for all three kids, make up the difference in relation to accommodation to house all 6 of us, and to  cover other expenses such as contriubution to vehicle hire, fuel and food etc.  

However we recognise that we may receive far more donations than we actually need to get to and stay in the States, so inlight of this we are pledging that we will give anything that we recieve over what we need to the Neurosurgical unit at Alder Hey, Children's Hospital.

All the staff from the Consultants to the play supervisors have been and continue to be amazing. The compassion, care and love for Ella and us as a family, coupled with the unbelievable gifts and professionalism have left a lasting mark on us as a family. These people will forever hold a place in our hearts for what they did and are doing for Ella. We had the privilege of meeting other families (from all over the UK) in similar positions and we would love to see the care of these children and others in the future to be like what we have experienced and more. Any money gifted above our needs will be given to the unit to use were need is identified from research to additional care needs for the children, such improving play areas, buying computer consoles etc. 

Over the past 2 months we have been supported by and prayed for by many different people from around the world and we have been encouraged greatly.  

We also want to share as Christians that we have been sustained by our Heavenly Father, through his word and through his people, this has caused us to run to him during this time rather than question his goodness and kindness to us - We have experienced amazing care from Gods people, our family and friends and we truly want to extend this to our new friends at Alder Hey. 

God Bless and thank you for your love, Care and support that you give to us.

Steve & Sian Robinson

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