My article for the Edinburgh Evening News on Luke Stewart and Diffuse Intrinsic Pontine Glioma (DIPG). You can read the full article on the Evening News website here.
Politics is currently paralysed by the issue of Brexit but we can’t lose sight of all the other issues that rightly demand our time. I was humbled to hear of the story of Luke Stewart. A seven-year-old boy from East Lothian, Luke was diagnosed in January with a condition called diffuse intrinsic pontine glioma (DIPG). This is an aggressive and rare tumour deep inside the brain. Fewer than 40 children a year in the UK develop them; in October it was reported that 38 children died of DIPG. I was delighted to be granted an end-of-day adjournment debate in parliament on Tuesday to highlight this rare condition, tell Luke’s story and press the Government for action on treatment, research, development and support. I was told about Luke by his grandad, Robert Ure, a Gilmerton man who has been such a popular pillar of the local community for decades. Luke was given six to nine months to live when he was diagnosed. Doctors advised the only treatment available to him on the NHS was a course of radiation treatment, which would only prolong his life by a few months.
Neil Armstrong, the first person to set foot on the Moon, lost his two-year-old daughter to DIPG 40 years ago and understanding of the condition has not really moved forward significantly since then.
However, Luke’s battle with DIPG led the family to Mexico, where Luke became the seventh child worldwide to receive a ground-breaking treatment called intra-arterial chemotherapy. Before he started treatment, Luke was constantly falling over and always tired. Now, he is back to being outgoing and happy, running and playing with his brothers. His tumour has shrunk, the cancer activity is lower and he has even returned to school.
The costs associated with his treatment, all living and travelling expenses were paid for by the family as the result of the generosity and financial support they received through a Just Giving page called AllHelpLuke. They rely on the kindness of others to be able to travel back to Mexico every five weeks so that Luke can continue to receive treatment.
Luke’s family were incredibly lucky to have such a strong support system, but others may not be.
I want Luke’s story to become the story of many other children with DIPG. I am pleased to hear that the Government is funding a radical upgrade of equipment to treat cancer, including £130 million to modernise radiotherapy across England (the NHS in Scotland is fully devolved but there are cross-border issues). The Minister, in responding to my debate, said that she would “leave no stone unturned in making sure that we get the best possible treatment”.
It is vital that our efforts in fighting cancer are international, especially with rare conditions. Without openness to data sharing and discussion, children like Luke may never have access to adequate opportunities for treatment. Leading experts from Great Ormond Street and Alder Hey Children’s Hospital are now talking with doctors in Mexico to better understand the treatment.
Cancer treatments are by their very nature evolutionary, and we must embrace new and innovative ways to save lives. I won’t mention the impact of Brexit on critical collaborations and research funding on the institutions that could cure these cancers in the future. Luke’s story is heartbreaking but he has a chance, his parents have hope, his extended family have pride, and we all watch and admire their strength, resilience, dignity and love for Luke.