Thumbs up for Charlie
‘Thumbs up for Charlie’ has been created in memory of Charlie who was a beautiful 5 year old who died after heroically battling an ependymoma brain tumour for three years.
Our aim is to support other families living with or affected by childhood brain tumours offering respite breaks to make memories or simply to reflect.
13 friends and players from Garstang Rugby Club have committed to completing the Lands End to John O’Groats bike ride in Charlies memory.
Funds raised will go the “Thumbs up for Charlie” Foundation and will help provide respite breaks for families whose child has been diagnosed with a brain tumour or families bereaved because of a childhood brain tumour.
We will also be using money to contribute towards future research, specifically around paediatric Ependymoma brain tumours.
Track the riders here;
Our son Charlie was diagnosed with a grade 3 ependymoma in June 2018. Charlie underwent a major brain surgery at Manchester Children’s hospital to remove the tumour and underwent a course of chemotherapy which was unsuccessful. We were told that nothing more could be done and that Charlie was being referred to Christie’s for palliative care.
As Charlies parents we were not prepared to accept this and sought a second opinion from an incredible surgeon named Conor Mallucci based at Alder Hey Children’s Hospital. Conor was very honest about the severity of Charlies tumour, he said he was willing to carry out a second look surgery but couldn’t make any promises. Charlie was then admitted to Alder Hey in September 2018.
The day Charlie had his second look surgery he was in theatre for a total of 14 hours. As you can imagine we were beside ourselves with worry, but to our complete amazement Conor informed us he and colleagues had managed to remove almost all of Charlie’s tumour. We felt utter relief. Conor had given us hope again.
Charlie was not unscathed following the surgery as he suffered cerebral mutism and had to learn to walk again. Once well enough Charlie underwent a third major brain surgery to remove the remaining tumour. Having then achieved a full resection (something we were initially told would not be possible) Charlie went on to have a 6 week course of proton beam treatment in Germany funded by the NHS.
We spent Christmas in Germany as a family with Charlie and his two brothers Jack (then aged 5yrs and Harry aged 1yr). Charlie completed his last treatment on 31/12/2018, we then boarded a plane and was home to see in the New Year.
Charlies following 3 monthly scan was all clear we could barely believe it, we felt such relief. Unfortunately Charlies following scan showed something suspicious, unable to confirm if this was a relapse for 6 weeks we decided to visit family in Australia for 4 weeks. Following our return Charlie’s scan confirmed our worst fears and Charlie had relapsed. On Charlie’s 4th birthday September 2019 he underwent his 4th major brain surgery, once again Conor was able to carry out a complete resection.
Charlie was given a course of introventricular chemotherapy which was cut short following a swelling in his head. Charlies next 2 follow up MRI’s were all clear, but sadly Charlie relapsed again in October 2020. Charlie had his 5th major brain surgery which again resulted in a full resection. In February 2021 Charlies tumour had returned and the scan showed multiple new tumours, Charlie was given palliative care but died on 07th April 2021 at home with his family.
We could not have been prouder of Charlie he fought all the way to the end. Charlie never ever complained and we would go so far as to say, he loved going to hospital. Charlie always carried his favourite “Blue bear”. He had the brightest most beautiful smile and an enormous heart.
As parents we are completely heartbroken and the most difficult thing to accept is that we know Charlie loved life and wanted to live.
During all his treatment Charlie was supported to attend a mainstream school with his brothers. Everyone loved him and he loved them. On the day of his funeral the village where he was buried was adorned with flags and people all wearing blue (charlie’s favourite colour).
It is utterly devastating to lose a child, it hasn’t just affected our family it has impacted everyone whose lives Charlie touched. In his memory we will be setting up the “thumbs up for charlie foundation” and in doing so hope to give back to families also affected by childhood brain tumours and give back to our local community who never stopped supporting us throughout.