A DAD from Talgarth is getting ready to run the London Marathon to raise awareness around paediatric cancer which sadly took the life of his four-year-old son four years ago.
Jon Wright and his wife Mel Barker experienced every parents’ worst nightmare when they sadly lost their son Drew Barker-Wright on February, 24 in 2017 after a battle with an “ultra-rare” childhood cancer called Paediatric Chordoma.
Affecting approximately one in 20 million children annually Paediatric Chordoma is a childhood cancer which occurs in the bones of the spine and skull base.
The cancer, which belongs to a group of malignant soft tissue and bone tumours known as sarcomas, is thought to affect two children each year in the UK.
Since his death, parents Jon and Mel set up a charity in his name in 2018 which looks to help fund research into Paediatric Chordoma and provide support to others affected by the rare disease in the UK.
Jon, who has previously run the Cardiff Half Marathon to raise money for the charity and awareness around childhood cancer, said: “We wanted to make a difference in Drew’s memory, to explore specific research and to ensure that other families in the UK wouldn’t feel as isolated as we did.”
The London Marathon 2021 marks the charity’s biggest fundraiser yet - an event which has seen 50-year-old Jon train for two years to take part in.
After winning a small charities place in 2019, the event was delayed due to the Covid-19 pandemic meaning Jon has had the challenge of maintaining his training.
Jon said: ‘I’ve been training for this day for over 2 years, as the event has been postponed twice now.
“It will be such an achievement to finally take on the course, get my medal for Drew and raise vital funds for childhood cancer research.”
Mel and Jon told The Brecon & Radnor Express that only £3 in every £100 spent on cancer research goes to children’s cancer - many children are regularly treated with decades old chemotherapy regimes which can lead to long term health issues and even secondary cancers.
“This is why I am running”, said determined dad Jon.
“I want to help raise awareness of childhood cancer, and help find kinder, targeted therapies developed especially for children. Cancer effects kids very differently to adults.”
He said: “Because their bodies are growing, disease can progress so quickly and aggressively. It’s not until you witness this first-hand that you understand how brutal it is.
“Living on a children’s oncology ward during Drew’s treatment has changed us for forever.
“If our Facebook followers alone could find it in their hearts to donate just £5, we would smash our target. Drew’s charity is run on a voluntary basis, so every penny raised goes directly to the cause. Together we can make a difference.”
Drew, who would be nine if he was still alive today, passed away only 16 weeks after he was diagnosed following a journey filled with complications from day one as a result of the cancer’s rarity which meant a lack of documented cases and the absence of a firm treatment plan.
Since founding the Drew Barker-Wright Charity around three years ago, the Talgarth couple - along with the help of family and close friends - have raised and donated £105,000 to research projects in the UK and America.
The funds donated have supported the development and characterisation of paediatric cell ins, the testing of new targeted therapies against these cell lines, and the development of a blood test designed to track the progress of Chordoma.
They have also supported two UK families through diagnosis and started a group for parents with children with Paediatric Chordoma - helping connect families from across the world.
“During Drew’s treatment, we felt so isolated”, said Drew’s mother, Mel.
The former Coronation Street actor said: “There were no treatment options due to the rarity of this cancer and everything was a guessing game, right to the end. It was every parent’s worst nightmare.”
Mel said that while she will be in London on Sunday to cheer her husband on, she will not be participating as they were only able to get one place in the marathon which is notoriously difficult to get even one space.
She said: “I’ll be there on the day - I get to be with Jon until about 8am and they he has to go into a private area. It didn’t use to be but I think it is now since Covid.
“He was ready to run back in 2020 but Covid came about two weeks before it was supposed to take place and so it was postponed and then cancelled.
“It’s a bit awkward because you can’t keep that level of training up.”
Mel said that Jon, who is both excited and nervous to take on the colossal distance, is “relieved” to be participating in the marathon after waiting for so long for it to come around.
The 47-year-old said: “Running that distance always comes with slight trepidation.”
The couple have worked really hard over the last three years since started the charity to raise money to make sure it goes directly into funding research into Paediatric Chordoma.
Mel said: “This way, we can make sure the money gets funnelled directly into that area. It’s good because we’ve got to work with Chordoma UK and one of the country’s top Paediatric Chordoma specialists from University College London, Professor Adrienne Flanagan.”
Mel said while they feel it is unrealistic to place targets of millions of pounds on the charity, they do raise “little bits here and there” which goes straight into helping the direct charities.
Before Covid-19 set in, Mel and Jon had set a fundraising target of £10,000, however this has been made difficult by the pandemic.
Plans for a Burns Night in February, a Ladies Afternoon Tea and a Disco Night all had to be abandoned as Coronavirus clenched the nation causing lockdown and isolation rules.
Instead Mel and Jon reset their target to £5,000 - a target which they have impressively almost met.
Mel said: “We hoped to raise between £5,000 and £10,000 so we are on track.
“We’re happy that it’s taking place in September because September is actually Childhood Cancer Month and you’ll see a gold yellow coloured ribbon which represents it.
“Jon is pleased to be running at this time of year as a result, and the charity has been posting different stories about different children on its Facebook page.”
Mel and Jon, who have raised £4,908.69 including Gift Aid for Jon’s effort at the London Marathon at the time of going to print, have also been trying to raise awareness around the lacking treatment for child cancer patients while helping affected families to feel less isolated.
“Awareness negates isolation and it is a very isolating experience,” said Mel.
“There is a lack of treatment options for children - in the last 60 years, only six drugs have been developed for children where as for adults there are hundreds.
“For children, it’s still the same drugs as from the 1960s - it’s horrendous. It’s chemical warfare which attacks everything.
“We’re trying to help find a treatment which is targeted so that it won’t have life-changing effects on children’s health or hair loss or secondary cancers.”
Following recovery from Paediatric Chordoma, Mel said that most survivors go on to develop Leukaemia or secondary cancers.
She added that most survivors do not go on to live full lives as they develop “debilitating issues in their organs”.
Mel said: “It’s as much about awareness as fundraising. I think a lot of people think that children are treated the same as adults when in reality the drugs just aren’t there.”
To find out more about it, visit The Drew Barker-Wright charity website by clicking here or its social media channels which post regular updates on fundraising activities and stories from other children like Drew.
To help Jon raise money during his London Marathon effort for childhood cancer in memory of Drew, visit his Virgin Money Giving page by clicking here.