Skye’s Story
“Skye as a baby made us laugh almost immediately. The overwhelming love you have for your child is like no other and the enormity of being responsible for a new life is a true honour. Skye was loving, bright and always made the most of every opportunity that came his way. His floppy blond hair, long eyelashes and engaging personality gave him an audience, he so enjoyed to have. His unique and mature personality left a mark on people’s hearts and minds wherever he went. He was my best friend.”
Sally Hall
For a woman, being pregnant allows you to immediately feel part of something amazing and allows you to wonder – wonder who they will be, what they will look like, will you be friends, will you be able to keep them safe and above all, will you make them happy?
It is not about what you want any more – this life you have created and grown is now more important than your own.
Skye was born on the 5th November 2008. The pregnancy and birth were normal. Skye as a baby made us laugh almost immediately with his star jump pose (the moro reflex) whenever he sneezed, he smiled constantly and lit up any room. He used to tell people with great pride that he was half English and half South African! His floppy blond hair, long eyelashes and engaging personality gave him an audience he so enjoyed to have. Even before he became ill, he made the most of every opportunity. His unique and mature personality left a mark wherever he went.
Skye adored developing and constructing magic tricks and pranks. It wasn’t long before Skye was blessed with a brother, Jesse, and the two of them became inseparable.
As a family, we were fortunate to enjoy an extended overseas holiday together from December 2012 to April 2013. We always knew that this was a special time for us all, but in retrospect it was an unbelievably precious time for us as a family. We still can't believe that during that period, there was absolutely no indication of what was lurking beneath the surface.
Unsurprisingly, Skye has many friends and always ‘had a go’ at new challenges. He adored his Pre-School teacher and when he graduated, full of confidence and excitement to be starting “big school”, he received this glowing report which sums up Skye perfectly.
"Skye is an intelligent boy; he is always meaningfully occupied in nursery, spending time engaged in play with friends, investigating or initiating games. He has a fantastic imagination and his play reflects this. Skye makes the most of every opportunity, often adding his own twists to activities, adapting them to suite his own requirements. It has been a delight to have Skye in nursery; his unique personality has left a mark and his absence will leave a hole."
Buzz McKenzie, Long Furlong Primary School, Abingdon
On Friday the 26th July 2013, Skye felt a little nauseous when he woke up, but as the day progressed, the nausea disappeared and he was his usual bubbly self. The pattern repeated itself the next day, but this time, he vomited. We suspected that he had eaten something which had disagreed with him, but It became a daily pattern, and after a few days, we booked to see the GP. This was to be the beginning of a very difficult journey.
After numerous visits to the GP and the failure of medication for acid-reflux to stem the daily episodes of vomiting. We insisted on a referral to the paediatrician. They said two weeks. We said NO! Today! That day was the 27th August 2013.
On that day, Skye was diagnosed with a brain tumour after a CT scan at the John Radcliffe Hospital in Oxford. Following surgery less than a week later, and tissue analysis, the tumour was identified as a Grade IV metastatic medulloblastoma, which is the most commonly occurring paediatric brain tumour. Although the doctors said we had caught it early, it had already metastasised throughout the brain and spinal cord.
Surgery, was quickly followed by 4 cycles of chemotherapy over 11 weeks, and a further 5 weeks of hyper-fractionated radiotherapy. Christmas came and went and after a 4 week period of recovery, Skye endured High Dose Chemotherapy, confining him to hospital for 7 and a half weeks. He enjoyed 4 weeks at home, and was due to head back to hospital on the 14th May 2014 for another round of High Dose Thiotepa.
Instead of getting stronger, it was apparent that Skye was getting weaker and an emergency MRI scan on the 20th May revealed that there were widespread White Matter Lesions within the brain and spinal cord, which caused a flurry of correspondence between consultants across the UK and abroad. He was started on high dose steroids to counter inflammation, but we were informed that this was highly unusual and very rare. We now know that a number of other children have also developed severe neurological side effects and the Milan Protocol has been with drawn from use in the UK.
It was initially diagnosed as radio-necrosis, which had been brought on by the combination of therapies which he has endured. It was later confirmed as radio-chemo neurotoxicity. He was in a state of paraplegia, with double incontinence, and very poor use of his upper limbs and hands. But he fought on, as did we. The treatment left him weak and vulnerable, yet strong and brave.
Our extraordinary boy never complained or let his physical disability stand in his way. In a desperate fight to revers the side effects Sky had been left with we began a treatment course of Hyperbaric Oxygen therapy. It was during this treatment in a pressurised chamber which mimicked a rocket, that his desire to ‘Loom to the Moon’ was born. To pass the time during treatment, Skye used colourful rubber bands linked together to create a record-breaking loom band chain of the most epic proportions. Using social media to gain support from the public, this became a countrywide campaign that drew attention to his plight, and increased valuable awareness of the shortage of research into childhood brain tumours and their treatment. Supporters rallied to his cause and the result was a Guinness World Record breaking 30,000m colourful loom band chain that is now destined for so much more.
Skye’s personal and best achievement however, was to have won the heart of his best friend Ellie and the two of them were ‘Married’ with Jesse attending as a pink bridesmaid!
Our dear boy Skye Benjamin Hall sadly died at home on 29th August 2014.
Skye’s goodness shone through and was incandescently bright against the horrid disease and subsequent side effects of his treatment. Skye’s enduring strength and good humour in the face of such adversity is a testament to the strength of his character and something every one of us should strive to aspire to.