On the 7th May 2017, We received the news that would forever change us. After months of misdiagnoses, many visits to our Gp, we knew something was wrong but nobody was listening. Charlie’s health rapidly declined just as he reached 6mths old and after many hours at our local A&E,  finally a doctor recognised something was seriously wrong..

Charlie was so poorly but the A&E doctors sent us home, looking back now he had very obvious symptoms, bulging fontanelle, head irritation, vomiting, It was terrifying. Thank goodness we persisted and took him back, he most probably wouldn't have survived if we'd waited the three days advised during our first A&E visit that weekend. Charlie's little body was under so much stress, I remember the way he continued to look up at me. Running with Charlie in my arms to the Radiology department, I waited next to the CT machine whilst he was scanned. The 20mins during that scan were a living hell. I was violently shaking with fear, he was so still without needing to be medicated, I thought he had died in the machine. I knew by the faces of the doctor and the radiographer they had found something terrible'.

Back in the A&E department a team of people scrambled round Charlie preparing him for an emergency transfer to King’s College Hospital London. Once at King's, Charlie immediately underwent a life saving operation to relieve a massive build up of fluid called hydrocephalus, caused by a growing tumour. 

We were in shock. We helplessly watched the now panicked team at our local A&E chaotically prep for the journey to kings. Charlie was laying on the bed as they continued to prod and poke him. We were paralysed by fear, the feeling can only be described as one continual panic attack, like drowning, suffocating in grief. I thought if I touched him, held him, he would let go and slip away from the pain. No parent should experience it and no child should suffer like that.

The ambulance ride was swift, but every so often his vital signs would drop and there was a risk of cardiac arrest. On our arrival to King's, a huge medical team were ready to receive us. We were told the gravity of the situation but that everything would do done to save Charlie.

The intensity of that night will never leave us. When Charlie made it through that first surgery, we immediately knew how lucky we were. To smell your baby again, to have any extra time was an overwhelming feeling. 

Charlie went into HDU recovery and a few days later underwent a second operation to decompress cystic parts of the tumour and to attempt a biopsy. Both surgeries and biopsy were a success and Charlie recovered remarkably well from the hydrocephalis but we were told that the solid component of the tumour couldn't be surgically removed without devastating impact to life. 

After a couple of weeks recovering in hospital, Charlie was discharged home and referred over to Great Ormond Street hospital to start his next stage of treatment. 

Our first appointment with Charlie's Oncologist at GOSH was very, very tough, so much information to digest under immense stress. Charlie would need months of Chemotherapy and it would be hard on his body. Even if chemo was tolerated and successful in stopping growth, we would unlikely see complete shrinkage of the tumour and ‘stability’ was the aim. We learnt that ‘stability’ is when the tumour cells are forced into a phase in which they have stopped growing or multiplying. IF ‘stability’  was achieved, it can be temporary so a high percentage of children need further invasive treatment after their first protocol.  A nightmare that we wouldn’t be waking from.

After the initial shock and the intensity of those first few months of treatment, we had time to digest his diagnoses and treatment plan. Although Charlie is under the care of the very best experts, It soon became apparent his treatment options are far from ideal. 

Most chemotherapy drugs for children were invented decades ago. Treatment drugs are very aggressive and can have life debilitating side effects and will eventually do more harm than good. Shockingly very little funding goes towards paediatric cancer/tumour treatment and very little advances are made. Children are left out in the cold compared to adult research. The truth isn’t widely acknowledged and that doesn’t sit well with us.

Our drive is as much to do with awareness as it is money, we ALL need to do something to change what is fundamentally wrong. Our fight for a diagnoses is one that is only too common and if one family is spared the trauma that we endured just by sharing our 'story' , then all the better.

Although life continues to be tough, we work hard to create a positive environment for our children. During treatment We moved home, balanced a job with childcare of our eldest child (who started school during Charlie’s treatment), hospital visits and emergency admissions, and ofcourse the isolation due to the high infection risk. But by the end of 2018, Charlie finished his first treatment protocol, a galling 18mths of chemotherapy. We then moved onto ‘watch and wait’ or ‘watch and live’ which is how the brain tumour community like to call it. 

The enormity of Charlie’s illness hits you in weaves. We now live alongside other families but on a very different path. Everyday is a battle for some kind of ‘normality’ but it’s important to turn it into something positive. It’s our job as Charlie's parents to stay informed and build on our current basic knowledge of paediatric brain tumours and contribute where we can to research programmes that might someday change all our lives, for the better’.

We are often asked which charity to donate to and it’s a very difficult question to answer as we have had invaluable help from many. After months researching charities and medical research programmes, we were told about The Everest Centre. We knew instantly we had to help the amazing work stated by Toby’s family

With the help from The Brain Tumour Charity, we have set up this JustGiving page to raise money for a groundbreaking international centre for research into childhood brain tumours, The Everest Centre. The Centre was opened in 2018 and is being part financed by The Brain Tumour Charity with money raised by a family and friends of a nine-year-old Toby Ritchie, who was diagnosed with a low grade brain tumour at the age of five. 

Donations into Charlie’s JustGiving page will be transferred to The Brain Tumour Charity where the funds raised in Charlie’s name will directly go to The Everest Centre. 

Charlie and his family are asking for you to spare any loose change you might otherwise have spent on a coffee, a magazine or maybe swap your Christmas cards for a donation this year. Consider organising a coffee morning or use a special occasion to help fight this injustice.

None of the money raised will go directly to us or Charlie. The Everest Centre and The Brain Tumour Charity will receive all the funds and any small contribution will make a huge difference. We’re hugely grateful.

The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours, making a difference every day to the lives of people with a brain tumour and their families. We fund pioneering research to increase survival, raise awareness of the symptoms and effects of brain tumours and provide support for everyone affected to improve quality of life. We are committed to having the biggest possible impact for every person affected by a brain tumour, and to defending the most amazing part of the human body.