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witness their child enduring the most horrific pain caused by cancer, or to witness the debilitating after-effects of outdated and harmful treatments.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.
Charlotte Fairall. In memory of Sophie Fairall – 12/08/2011 – 18/09/2021.
Quote of the week