Do Not Let Your Hearts Be Troubled – featuring Ben Morris from the album “Risen! The Musical” recorded and produced by Joffy Girling
I have been sharing the story of Sophie’s journey and wish to do so again via this video to tell the story of how her horrible illness and tragic death have inspired so many, many people and have raised the awareness of the underfunding of childhood cancer.
I also have to share this video with you – it really does exemplify the impact that Sophie had – I have never heard of a professional football match being stopped (after ten minutes – Sophie’ age) to allow everyone, and I mean everyone, players, coaches and fans from both teams to join together with a minute’s round of applause.
In my blog of August 26th, I shared this song written by ex-Crofton pupil, Jo Downs. Here is an extract from Jo’s explanation of why she wrote the song which is now accompanied by the featured wonderful dance video:
“Sophie was diagnosed with a very rare and aggressive form of cancer, Rhabdomyosarcoma at the age of 9 in September 2020. She had a large tumour removed and went on to have 9 months of very aggressive, intensive chemotherapy to try and eliminate the cancer. Devastatingly, the tumour returned this April and her family have had to make the decision to not put Sophie through any further treatment and allow her to enjoy fulfilling her bucket list of life experiences in the time she has left.”
I can tell you that people like Ed Sheeran, Gordon Ramsey, Mason Mount and Jack Grealish helped Sophie enjoy much of her bucket list. I can also tell you that Sophie’s story of bravery inspired so many people that 9.9k people have so far commented when Sophie’s mum, Charlotte had to tell everyone that tragically on Saturday morning her beautiful Sophie died.
It is my privilege to share a post from Sophie’s beloved mother
My name is Charlotte Fairall and I do not want other mums to have to suffer the most horrendous cancer journey like I have. No mother should have to witness their child enduring the most horrific pain caused by cancer, or to witness the debilitating after-effects of outdated and harmful treatments.
My beautiful daughter, Sophie, at just 10 years of age, was taken from us on 18th September 2021 by this horrid disease.
At no point during this last year, has Sophie given up, or not lived-up to her end of the bargain. She has fought hard, she’s been relentless in her fight, she’s shown dogged determination and spirit throughout her journey. SHE did not lose the fight to cancer, she was let down by the lack of funding, research, awareness and support available for children with cancer.
Sophie’s legacy will be one dedicated to the cause for real and impactful CHANGE in outcomes for children with cancer. During the long periods of painful, tiring and draining rounds of chemotherapy and radiotherapy, Sophie told me that she wanted CHANGE. She wanted things to be better for future children who endure this battle. Better food, better play, better care, kinder treatments and better support for parents.
Here’s how we can make CHANGE.
Most people will not be aware of the frankly shocking statistics around funding for childhood cancer. Only 3-4% of government cancer research funding in the UK is fully dedicated to childhood cancer.
Yet, cancer is the number one killer of children age 0-14 by disease in the UK. So, how can governments and cancer research organisations justify the pitiful % of funds that go in to identifying cures and new treatments for childhood cancer?!
Why isn’t this an issue of national importance? Why are we still allowing beautiful children like Sophie to endure the most horrific end to their lives because drug companies and Government feel as though these children are not worth it?
We need to stand together and make this CHANGE. It will be Sophie’s legacy.
Sophie’s cancer was a form of Sarcoma, known as Anaplastic Rhabdomyosarcoma. It is extremely rare. Accounting for 3% of childhood cancer cases each year. Sadly, survival rates for Sarcomas remain very low and on relapse, there is only an 8-20% chance of survival.
Sarcomas are cancers that can resemble bone or soft tissues. Rhabdomyosarcomas are the most common soft tissue sarcomas that occur in children and they tend to look like developing muscle or fibrous tissue. It is a highly aggressive form of childhood cancer with a variety of subtypes such as embryonal and alveolar which influence the outcome. They can originate in almost any part of the body and are commonly seen in the head and neck, abdomen, chest and bladder. There are around 70 new cases in the UK each year. They are currently treated using a combination of surgery (if possible), chemotherapy and radiotherapy which results in debilitating short- and long-term side-effects.
The long-term side-effects are just horrific. Children who endure these archaic and damaging chemotherapy and radiotherapy treatments, often must deal with life-long, serious heart conditions, kidney issues, fertility problems and cognitive issues. These are just a few of the side-effects. The harsh treatments used such as cytotoxic drugs and radiotherapy, are so toxic that some children die not from the cancer, but from the actual treatments.
Here are some of the statistics that we need to CHANGE:
– About 1,900 children (up to the age of 15) are diagnosed in the UK with cancer each year
– Around 240 children in the UK die from cancer each year. This is more than 4 children each week.
– Only 4 new drugs have been approved in the last 20 years to treat childhood cancers
– Drugs used to treat Rhabdomyosarcoma and have seen very little change in treatment or research in decades! Some of the cancer drugs Sophie was given, haven’t changed since the 1960s.
Sophie’s legacy will be one of hope for children with cancer. During her fight, Sophie often talked about the changes she wanted to make for other children in the future. She didn’t want others to have suffer like she’s suffered. Sophie wanted more to be done. Sophie demanded CHANGE and it will be my life’s work to make this CHANGE.
Together we can all make an impact, and with Sophie’s star shining brightly above us, we won’t rest.
Bathe Me In Your Light – featuring Lucy Stimpson- Maynard from the album “I Look Up To The Heavens” recorded and produced by John Hodginson
Some weeks ago, I received a message out of the blue from an old friend, Jon Gamble, who I had not spoken to since we were at college together – King Alfred’s College, Winchester to be exact. He had not been a PE but an Art student and we had got to know each other by working together on the College Social Society, organising concerts and the like.
Jon created the promotional artwork (which was brilliant) and I booked the bands and venues. We had some success, but also one total disaster when no one and I mean no one (except the band members themselves) turned up at for a concert I had organised at The Guildhall, Winchester. I remember one of the bands being “The Alan Bown Set” https://en.wikipedia.org/wiki/The_Alan_Bown_Set who were pretty big at the time. I still have nightmares dreaming of the expected long queue of people waiting to come in but who never did. I should make it clear that there had been no drop in the quality of Jon’s promotional artwork, it was just that I had not got round to putting any of his promotional artwork (i.e., posters) up!!
Anyway, Jon and I have been having some great phone calls, sometimes reminiscing on college “good old times,” including what happened to ex-girlfriends, but we have also had some very interesting discussions on “life.” In addition, it turns out that Jon’s son is Richard Gamble who, as some of you may know, is the one with the vision of the amazing project- “The Eternal Wall of Prayer.”
To explain all about “The Eternal Wall of Prayer” please open the ITV interview video at the start of today’s blog and also this link – https://www.crowdfunder.co.uk/eternalwall– the latest “Theophilus-The Musical” extract can wait till next week.
In the last few weeks, I have featured the inspirational speaker Nicky Vujicic who has no arms or legs. I have now discovered another amazing man who has no arms, Egyptian Ibrahim Hamato, but who plays table tennis with his mouth!
He took part in the recent Para Olympics but today’s video shows him playing against a “Table Tennis You Tuber.”
Ibrahim who lost both arms in an accident when he was ten years old really does exemplify that “nothing is impossible” or as Nicky Vujicic puts it ” If you don’t get a miracle become one.”
Today’s other video is another extract from Mustard Seed’s forthcoming “Theophilus The Musical”
You are my Rock – featuring the Mustard Seed Soul Band with Ross Gill on vocals. Recorded live at a Mustard Seed Concert.
Two weeks ago, I posted a video of Nicky Vujicic, the inspirational guy who was born with no arms or legs (just what he calls his “chicken drumstick” foot) He said something in that video that really touched me – something like “I may not have hands to hold my wife’s hand but if it happens, I can still hold her heart.”
Having re visited the video I realised that there was a part missing from the video I would show those pupils at Crofton School that I was mentoring. It featured Nicky stating that it’s not the end until you have given up. The featured video shows him making this point most dramatically, starting around 4 mins 50 secs.
Also, Nicky has been able to hold the heart of Kanae, his beautiful wife as can be seen in the second of the videos, which also shows his lovely children.
The writer of this beautiful song, Jo Downs is an ex-Crofton School pupil and had also been a member of the Mustard Seed Soul Band when, for example we performed our first musical “His Story” at The Central Hall, Westminster, London. Tim, her highly talented husband who, I am sure had a part to play in “The Arc of a Rainbow,” was also a member of the Mustard Seed Soul Band playing saxophone- Jo playing trombone. Jo and Tim are really lovely people and this song is a great example of how they put their amazing musical talents to such good use.
Jo wrote the song for Sophie – here is the story:
Many people in our local community and beyond have been following Sophie’s Journey and I wanted to do something for her and her family to help raise money towards their chosen charity and also as a tribute to what a strong, positive girl she has been throughout all of her suffering.
Sophie was diagnosed with a very rare and aggressive form of cancer, Rhabdomyosarcoma at the age of 9 in September 2020. She had a large tumour removed and went on to have 9 months of very aggressive, intensive chemotherapy to try and eliminate the cancer. Devastatingly, the tumour returned this April and her family have had to make the decision to not put Sophie through any further treatment and allow her to enjoy fulfilling her bucket list of life experiences in the time she has left.
Alice’s Arc was set up to improve research and funding into developing kinder treatments for children with Rhabdomyosarcoma. Children are given the same treatment as adults yet their bodies aren’t developed in the same way and can be damaged irreversibly by the strength of it. Only 4-5% of funds raised for cancer charities go towards researching children’s cancer and Alice’s Arc works in conjunction with the Institute of Cancer Research and Great Ormond Street Hospital to help change this, as well as giving vital support to children and families affected by the disease.
If you would like to donate to this most worthy cause please go to https://www.justgiving.com/fundraising/songforsophie
Regular readers of this blog will know that for the last couple of weeks I have shared quotes by Nicky Vujicic. Some may say “Who is he?” Well, when I was mentoring students at Crofton School I often shared today’s video with them as I found it so inspirational. And on that note I am going to leave it there hoping that you will now have time to watch Nicky’s video and also the latest extract from “Theophilus- The Musical which is Peter’s account of how he escaped from prison (with the help of an angel!)
Quote of the week
First just to say that I heard the featured song at Holy Rood Church on Sunday and loved it so much that I thought I would give the “Theophilus The Musical” extracts a rest for a week and share it with you today. All involved look so full of joy!!
So carrying on my swimming story from last week…..
So, the day of the Bronze Medallion examination came and there standing before me was the stern looking Examiner from the Royal Lifesaving Society –I literally froze when said examiner pointed to the person I was to save – not the planned lightweight Micky Palmer but the very much unplanned heavyweight and I meant heavyweight, Simon Grant.
Well diving for the brick was no problem – all that holding my breath under the water in my bathroom sink as a 11-year-old coming in handy – however cross chest towing Simon (actually I now remember his name was Jim) was a whole different ball game! As I said I had been practising with Micky Palmer, who apart from helping me keep him afloat by illegally “skulling” was also small enough for me to get my arm right across his body to tow. Jim, however was anything but small and even with a stretch I could only get my arm across his first pectoral.
I think it was two lengths of towing that was required to pass the test – I remember half way up the second length looking up at the lights in the ceiling (we were using the swimming pool of Winchester College -the Public School and not to be confused with King Alfred’s College, the Teachers Training College which I was attending) Anyway me (and Jim) seemed to be stuck under one light as it (or us) was not moving. All my PE mates, who had already finished their cross-chest tow, started to cheer me (and Jim) on from the pool side and somehow, I (and Jim) found ourselves at the end of the pool to be greeted by the Examiner with a stop watch in his hand. It was obvious I had failed as there was a strict time limit to the test which I must have been over by a least half an hour (!) However the Examiner said “That was a real swim for you wasn’t it?” I just nodded, too exhausted to reply.
I am not sure if it was out of sympathy, if he wanted to acknowledge my effort, or if he was simply grateful that Jim had not drowned on his watch but somehow, I passed! The Bronze Medallion, as seen in today’s pic, still means a great deal to me as I worked so hard to get from being scared stiff of the water to being a qualified life saver!
Oh, apparently Jim still has the scars of where my fingers dug into his left pectoral
So last week I said that I would share my swimming story.
My brother Jack was the Kent Breaststroke Under 15 Champion so I should have had some swimming DNA somewhere, however I obviously did not. For a start I hated the smell of the chlorine in the outdoor swimming baths at “The Strand,” Gillingham, Kent which is where I grew up. I am, therefore not sure what I was doing there – I just remember aged about 8 getting pushed and falling into the water and, although it was only the shallow end, having water go up my nose and feeling a few moments of utter panic. Needless to say, I did not stay but went home, probably crying.
I also fell into two boating lakes, once back at “The Stand” and once at the Isle of Wight. I just remember being under the water, not sure whether to hold my breath or not, looking around and seeing everything green before popping up to the surface and getting grabbed and hauled to safety- I think on the Isle of Wight occasion by my brother- anyway two more frightening experiences.
My family went to Butlins for a holiday and there was a restaurant in which somehow you could see people swimming underwater in the indoor pool and I remember thinking that must be cool but there was no way that I could ever do it. However, I thought I should make an effort to be less frightened of the water and so I started to put my head into the bathroom sink which I had filled up with tepid water – I would have been about 10 years old at this time. The sink led on to a large tin bath that we had in the garden – I could hold my breath for quite a long time and eventually managed to even open my eyes under the water.
The Portsmouth Technical High School had a big bath the same as you may have seen professional footballers use after a match. After a school match and everyone had finished in the bath, I would stay, again practicing putting my head under the water- there was however no way that I could get my body horizontal in the water – somewhat of a prerequisite for swimming!
I suppose I was about 14 when Mike Sprenger, a former school friend came to stay during the summer holidays – he had moved away from Portsmouth to live in the Isle of Anglesey as his dad was in the Military. Every day of the week we would go to “The Lido” in Portsmouth and somehow Mike got me to swim a few strokes of breaststroke.
By the time I had got to college I could swim breaststroke ok but was hopeless at front crawl – in fact I still am as my wife, Caroline will testify. She is a really good swimmer and thinks my attempts at front crawl, especially trying to use the proper breathing technique, are hilarious.
I had a problem- I was hoping, after college, to teach at Whitchurch Sec School which had an outdoor pool. I therefore needed my Bronze Medallion lifesaving award in order to be qualified. Of course, I had no chance of obtaining it and so had little chance of getting the Whitchurch teaching job. However again someone came to my rescue in the form of a colleague from college. He travelled regularly with me from Winchester to the baths in Portsmouth to teach me the cross- chest tow, diving for a brick and all the other stuff needed to obtain the coveted Bronze Medallion. Back at college everyone knew my problem and so it was set up for my partner (the one I was to cross -chest tow) to be Micky Palmer, who was nice and light and who promised to help me keep him afloat by secretly sculling with his hands (secretly as its not allowed to give the life saver any assistance)
So, the day of the Bronze Medallion examination came and there standing before me was the stern looking Examiner from the Royal Lifesaving Society –I literally froze when said examiner pointed to the person I was to save – not the planned lightweight Micky Palmer but the very much unplanned heavyweight and I meant heavyweight Simon Grant. What happened next, I’ll share next week
When I saw this week’s featured video of the USA artistic swimming team I though wow! Very similar feeling to when I saw “Spellbound” in “Britain’s Got Talent” back in 2010 (which I have also featured) Just jaw dropping performances that make you wonder at what amazing things we human beings can achieve.
The artistic swimming also reminded me of my own experience with swimming which I will share next week – but please this week take a look at these two videos (three, including the latest extract from Theophilus- The Musical) and be amazed, entertained and enthralled. I’ll share my swimming story next week.
