In August 2017, our world turned upside down when our youngest son Joshua, age 15, was diagnosed with a brain tumour called diffuse midline glioma H3k27m. The prognosis of this mutation is 0% survival rate, with an average survival of 9 - 12 months, with less than 10% making it past 2 years. Joshua was exceptional. He showed true determination, strength and willpower. However, he tragically passed away at home, during Covid lockdown, in late February 2021, two months before his 19th birthday.

Josh developed a tremor in his right hand which initially we thought was a trapped nerve. As it persisted for a week, we sought medical help and after an appointment with a consultant neurologist at the local hospital, Josh was transferred to GOSH.

He had a partial resection at the beginning of September 2017, followed by six weeks of radiotherapy and nine months of chemotherapy before being accepted onto the ONC201 clinical trial in New York in August 2018. As a parent when your child is given a terminal diagnosis, you are in disbelief. Hence trying to gain time for Josh. This clinical trial, although tiring from a travel point of view, gave Josh time and save for fatigue, allowed him to lead a largely normal teenage lifestyle. Josh didn’t want to be treated differently.

Joshua had many interests and a dream of becoming a human rights lawyer. He was a talented singer and loved acting. He was given lead roles from a very young age, progressing to A level Drama which he continued to enjoy until lockdown. He also enjoyed sport particularly rugby (until he was no longer allowed to play), football and cricket. He continued to play football for as long as his illness allowed and represented his school in both cricket and football. Josh always thought of others and even though he was going through the most unimaginable ordeal he never wanted to let people down and always pushed through rarely allowing others to see how he was truly feeling.

In Josh’s end of school year book in 2020, there was a question asked: Where do you see yourself in 10 years? He wrote: “Raising awareness and funding for Brain Tumour Research”.

In Josh’s honour we want to raise awareness and funding for research into Diffuse Midline Glioma, and would love for friends and family to fundraise on behalf of Team Joshua, in his memory, in the hope that one day no other young person has to endure the pain and suffering that Josh experienced.

We love and miss you Josh xx

Read Joshua's story here