I remind hon. Members that there have been some changes to normal practice to support the new call list system and to ensure that social distancing can be respected. Members should sanitise their microphones using the cleaning materials provided before they use them, and dispose of that material as they leave the room. Members are also asked to respect the one-way system around the room, and to exit by the door on the left. Members should speak only from the horseshoe, and I therefore ask Members currently at the horseshoe to vacate a seat for the Members at the back who want to speak in the debate—once they have spoken, obviously. I call on Tonia Antoniazzi to move the motion.
That this House has considered e-petition 300027, relating to research into childhood cancers.
It is a pleasure to serve under your chairship, Mr Mundell, and an honour to lead for the Petitions Committee in this debate. I welcome the large number of colleagues who have put in to speak today, and pay tribute to those who are unable to do so due to the parliamentary covid restrictions. As chair of the all-party parliamentary group on cancer, I really wanted to lead on this petition, as it is one that has touched many parliamentarians and their constituents. Indeed, I was approached by the hon. Member for Calder Valley (Craig Whittaker), who is unable to participate today, who asked me to pay tribute to his constituents Julia and Darren, who lost their beautiful daughter Fifi to childhood cancer. I put on record my heartfelt thanks to the petitioner, Fiona Govan, who lost her grandson Logan to a type of brain cancer called diffuse intrinsic pontine glioma, and to Amanda Mifsud from the charity Abbie’s Army, which was set up following the death of six-year-old Abbie from DIPG in 2011.
Children’s cancers represent under 2% of all UK cancers. Despite this low number, that still means that over 500 children die from cancer each year. It is the most common cause of death in children. The great news is that since the 1970s, mortality has decreased by around 70%, and even with the debilitating side effects of many treatments, that is testament to the achievements of research in saving our children. One caveat to those figures is the massive variation in survival rates by cancer type: 99% survival for retinoblastoma, contrasting with 0% for DIPG. Many forms of cancer affect children, but after speaking to Fiona and Amanda, I am going to concentrate on the disease that took Abbie, Logan and so many others.
DIPG is a highly malignant brain tumour located in the pons, or pontine, area of the brain stem, almost exclusively affecting children. DIPG tumours are one of the most aggressive forms of cancer, and the prognosis for children diagnosed with it is terminal—it has a 0% survival rate. What also struck me was that while there have been huge leaps in the treatment of many other cancers and diseases, nothing can be done to treat DIPG. Neil Armstrong lost his daughter to DIPG in 1962, and since that time there has been no development in treatments, let alone a cure. Thankfully, childhood cancers are rare, but that also means that they do not get the research funding that other cancers attract, and are often seen as too difficult to tackle. As Dr David Walker wrote in The Telegraph in February 2016:
“So-called ‘rare’ cancers are collectively as common as the ‘common’ ones. But the perception that research should be funded according to incidence means that individual rare cancers are doomed forever to receive a fraction of the money.”
It is an honour to serve under your chairmanship, Mr Mundell, and to follow my Welsh colleague, the hon. Member for Gower (Tonia Antoniazzi), who moved the motion on behalf of the Petitions Committee.
I want to speak about unbeatable Eva, a 10-year-old constituent of mine. I have been involved and in contact with her since she was diagnosed with DIPG in January. As we have heard, this is an inoperable brain tumour, inside the brain stem, and the prognosis is a life expectancy of less than 12 months. Today, it is 11 months and seven days since Eva was diagnosed with that horrendous tumour. The global pandemic has been particularly cruel to Eva and her family. Not only was there no suitable treatment for Eva in the UK, but she was unable to fly to the United States to receive experimental treatment. The cruel hand of covid stopped Eva travelling to Europe to receive life-prolonging pharmaceutical treatment. Think for one minute about the agony faced by a parent knowing that treatment is available and could prolong their child’s life, but being powerless to do anything about it. How cruel is it that, in any other year, Eva might have received that treatment? Covid took that chance from her.
The benefit of these debates is that they show the strength of feeling on a topic. Petitions allow the public to influence what we, as parliamentarians, discuss. Eva and her family should be proud of how much awareness they have raised nationally for this cause. DIPG has been talked about by many Ministers and the Health Secretary. Eva’s name has been mentioned by the Prime Minister in the Chamber, and her plight was highlighted on “Children in Need” and across the news channels. Wrexham has rallied around this little brave girl, and her parents have privately raised more than £310,000 to fund her treatment. I am here today for Eva, and I hope, Mr Mundell, that you deem it appropriate for me to read out a statement from her father, Paul.
We are here to advocate and fight for our constituents; that is our job. However, what really matters is how our constituents interpret the situation they find themselves in—life through their heartbroken eyes, facing tragedy day by day. Paul has asked me to read this out: “60 years ago, Neil Armstrong lost his daughter to DIPG. On the 1st of January this year, when we received Eva’s diagnosis, her treatment plan was the same as it was all those years ago. The lack of progress is solely down to one thing—funding. In a week where the UK Government approved a covid vaccine, having spent in excess of £6 billion on research and development, it is hard to feel anything other than anger. If some of that money had been spent on the cure for this horrific form of cancer, imagine how many parents would have been spared the conversation we had with doctors in January, and more importantly, imagine how many children would have been able to live full and happy lives, as every child should. All cancer is devastating, but the facts about DIPG and the devastation it causes parents, siblings, grandparents, friends and family make it the very worst of the worst, and more must be done where it can.”
I thank my hon. Friend the Member for Gower (Tonia Antoniazzi), a fellow member of the Petitions Committee, for introducing the debate. There is no greater champion of families affected by cancer, and I thank her for all the hard work that she does for them, week in, week out. In the short time available, I will tell the story of Izzy Withers, a constituent of mine who tragically passed away last year due to childhood cancer. Her mother Tracey shared their experience in the hope that it would highlight the desperate need in this country for more funding for childhood cancer treatment.
In August 2018, 16-year-old Izzy fell ill, and in September that year she received the devastating news that she had DIPG and a stage 4 brain tumour. DIPG is a highly malignant childhood brain cancer that disables the nervous system, and the prognosis is grim—fewer than 10% of children diagnosed survive longer than 18 months. That meant that Izzy was effectively handed a death sentence. DIPG is very resistant to chemotherapy; it is extremely difficult to treat. Tracey Withers described the tumour as like sand in grass. The treatment of Izzy, like that of Karen Armstrong, Neil Armstrong’s daughter, therefore consisted of radiotherapy, which in turn destroyed their healthy brain tissue. The radiotherapy affected Izzy’s ability to walk and use the left side of her body. She eventually lost all capacity to walk. After seven weeks at the Royal Gwent Hospital and two weeks at the Teenage Cancer Trust in Cardiff, Izzy and her mother spent 13 weeks living at Tŷ Hafan hospice. Tracey described Izzy’s illness and the effects of the treatment as a bit like locked-in syndrome. Her body shut down and she lost the ability to walk and move, and eventually she struggled to swallow. Children with DIPG die a protracted, painful and horrendous death. That is why more funding is needed for research to ensure that, in the future, children diagnosed with childhood cancers with a low survival rate and their families have more options.
It was the privilege of my life to hold the role of cancer Minister in the previous Government. Through that work, I learned of the battles of DIPG patients and the all-too-tragic outcomes.
As ever, it is the personal stories that connect. I wish I could show Members the pictures, but I have the words of Emily, the mum of Atticus—a fantastic name:
“In June 2018 our happy, charming, caring 4 year old son started to exhibit very mild symptoms which gave us cause for concern. Slight issues with balance, difficulty concentrating and mild drooling. Nothing significant but…you know when your child is not ‘right’…Atticus went…for a CT scan and was then referred to Southampton General for an MRI. On 1 July 2018, 2 years ago, my husband and I were guided into a small room to be given the results. I will never forget that moment. The neurologist told us that…he had a likely survival time of 9-12 months. In one breath our whole world came crashing down and we began to grieve—even though Atticus was still with us…On 7 February Atticus fell asleep forever in the bed next to me. I’ll never, ever forget watching my child pass away. It is the most unnatural, unjust and devastating experience any parent can suffer.”
Emily wrote to me again the other day:
“As we face the second Christmas without our beautiful boy, we can take some comfort in the prospect of increased funding and research to help eradicate this terrible cancer. It is all we can hope for.”
I guess the question is whether we—and whether they—have hope. As has been said, a child diagnosed with DIPG today faces the same prognosis as a child diagnosed over 50 years ago. Survivable rates are near zero for this particular cancer.
It is true, as the Government said in their response to this petition, and as the Minister will almost certainly say today, that
I thank the hon. Member for Gower (Tonia Antoniazzi) for securing this important debate and all those who signed the e-petition. Cameron Truesdale’s name will not resonate with people in this room, but I am speaking of a little boy who is now safe in the arms of Jesus. He was a little 11-year-old boy from my constituency, who had so much to live for but who did not get the opportunity.
His mum described him as sweet, shy and popular. He never had a bad word to say about others. He was good at maths. In his own words, he wanted to be an “entrepreneur”. He was a super cool big brother and he adored his sisters Chloe, Courtney and Catlin. Sadly, Cameron’s life ended on 3 September 2018, but his memory is still alive.
When Cameron was diagnosed with DIPG cancer in January 2017, his family were told that he would have nine months to live, if he was to receive radiotherapy and steroids. “Go home and make memories”—the most chilling and heart-wrenching words that any family will ever hear. Cameron’s family were devastated that in the 21st century they would be told that there was no hope and, no matter what they did for Cameron, he would die anyhow. Cameron’s family believe that where there is life, there is hope. Cameron’s family immediately looked at therapies around the world. They raised thousands of pounds and travelled to Mexico, where Cameron received treatment. While it did not save his life, it gave them hope and extra time to make those memories.
Cameron and his family fought DIPG with courage and determination. Cameron did not want to die. Even towards the end, when he was very poorly and DIPG had stolen every function apart from his ability to know what was going on, his mum asked him whether he wanted to stop fighting and just rest, or for her to stop fighting. With tears running down his face, even in agony, he did not want to stop, because he loved life.
We have already heard today that the survival rate for DIPG is 0%. That is just not good enough and not what we should settle for. Cameron should not be a statistic and we do not want any other families to go through the pain and anguish of losing a child. In Northern Ireland alone, three young people are diagnosed with cancer every week. That means three young people facing huge physical and emotional challenges, doubts, fears and anxieties. We must ensure that science is being supported to increase survival rates and to break this dark, sleekid thief.
I commend the hon. Member for Gower (Tonia Antoniazzi) for opening this debate, and I also commend Fiona Govan for her incredible work to secure the signatures needed to trigger this debate. I know that Fiona would say that it is the least she could do following the loss of her grandson, but she, along with many other families suffering the same trauma, expects us to do something. The Minister understands that, as I know her to be a caring and compassionate individual.
In Fiona’s case, as we have heard, her grandson Logan died of a DIPG, which is a childhood cancer that wipes out hope and brings to an end a life of promise and potential. DIPGs, as we have heard, are tumours that are highly aggressive and difficult to treat, found at the base of the brain. But Fiona and her family are not alone; we all have families in our constituencies who have lost children to brain cancers.
I have the great honour of chairing the all-party parliamentary group on brain tumours. The charity that supports this influential APPG was born out of the loss of a girl following a diagnosis of DIPG. I cannot pretend to know what a family goes through when they are told such terrible news, but I can share a little in the pain, having lost a son at just nine months old. An account of Fiona’s family’s story can be found on the Brain Tumour Research website, and it is really powerful reading, for those who have not read it already. It sets out precisely the journey, and the trials and the challenges, that they had to go through, as their son and grandson lost his life.
When a family is told that their child has a DIPG, they do not have to search far to learn that just 10% of children diagnosed with this type of brain tumour survive for up to two years following a diagnosis, and that only 2% survive for as long as five years, and we know that few of these children, if any, survive at all for longer than that. As we have heard, this prognosis has not improved.
Thank you, Mr Mundell. In July, I was fortunate enough to secure a question at Prime Minister’s Question Time. As Members across the Chamber will know, that is when we try to think of the best political hit we can get, but on that day there was only one question I was going to ask. It was about a young man, Daniel Caplan, a constituent of mine who had just turned 17 and had been diagnosed with diffuse midline glioma—a brain stem tumour. As I explained to the Prime Minister, it was a terminal diagnosis and, of course, an absolutely crushing one for Daniel and his family. As the hon. Member for Gower (Tonia Antoniazzi) said, I am so sorry to say that Daniel died last week.
I did not know Daniel, but I was really struck that one of his friends, Martin, who spoke to me earlier this year about something else entirely, made sure to tell me what a great person his friend Daniel was. It is crystal clear what a special and very much loved young man he was. If I, who did not know this lovely young man, am so devastated to hear of his loss, I cannot begin to imagine how Daniel’s family can cope with it, just at the time when, if things were different, he would be looking to make his way in the world and realise all of his potential. I have been thinking about them a great deal.
For families like Daniel’s, and all those we are hearing about who have received the devastating news of a childhood cancer diagnosis, among all that awful news is the terrible realisation—one they probably never had cause to be aware of before—that there have been no new treatments for these conditions for 40 years. There has been no progress in treating childhood brain stem tumours. That is stark and shocking. It is absolutely right and necessary that we heed the call of all those families faced with that terrible news when they ask for a renewed focus on research and for a light to be shone on awareness of childhood brain stem cancers so that others do not have to face what they have gone through. I was glad that the Prime Minister agreed with me when I asked for his commitment to shine that light and to bring focus to this issue.
We can choose to be affected by the world or we can choose to affect the world. My constituent Isla chose the latter. In August 2017, seven-year-old Isla Tansey woke up unable to walk. After many horrible treatments, surgery and radiotherapy, in January 2018 she was diagnosed with DIPG. Isla’s mother described the terminal illness as the most traumatic and heartbreaking experience for a family ever to go through. Sadly, Isla passed away in July 2018, but not before inspiring thousands around the world with her positivity and creativity through her hobby: painting stones and pebbles.
Isla asked others to join in by painting their own stones, with any design, but she asked them to include the hashtag #islastones and the words “photo, post, re-hide”, and then to send a picture to a dedicated Facebook page for her to see. They were subsequently to leave the stones somewhere hidden, so that when they were found they could spread a little of the joy that Isla’s idea had given them—a little reminder of Isla’s joy. Isla’s mother, Katherine, hoped that a child might one day find one of the stones, learn about Isla’s story and become a researcher in childhood cancer.
Thousands of people took part in more than 149 countries. Although Isla could no longer walk, she loved to see where all the stones ended up and where they would travel to next. Places included the Taj Mahal, New Zealand, Disneyland and America, with a very special stone in Antarctica. Through the stones and the lovely people who made them, hid them and posted their photos, Isla travelled the world.
The hashtag #islastones grew to a Facebook presence with more than 75,000 members from all around the world. In 2019, a year on from Isla’s passing, at the Celebration of Smiles event in Hinckley in my constituency, a world record was set for the largest display of painted stones, with 8,542 stones—all in remembrance of Isla.
To continue her legacy, Isla’s parents, Simon and Katherine Tansey, set up the Islastones Foundation for raising smiles and helping to fight childhood cancer: a reminder of the fun and happiness that Isla brought to so many people’s lives. Isla is now permanently memorialised at Argents Mead in Hinckley, where her legacy of smiles and positivity will live on for ever.
20 of 40 shown
As such, the equivalent of a classroom full of children die from DIPG in the UK year after year, while there are no meaningful advances in treatment options and no current UK trials.
What does the petition ask of the Government? Less than 21% of research funding on childhood cancers is provided by the Department of Health and Social Care, and there is little transparency on where the funding goes. To change that, the petitioners want the National Institute for Health Research classification system to include specific cancer types and age data. They also ask for a commitment from the Government on ongoing funding obligations and for a set percentage of other funding to be ring-fenced for research on childhood cancers. We also need to look at reprioritising funding, to make sure that money is being used strategically for actual research—and that it is not spent on infrastructure, as happens at the moment.
We need to take full advantage of the highly accomplished researchers we have in the UK, such as Professor Chris Jones, but they need funding to answer the key scientific questions, such as, how can we do better and how can we help these children? That has been done in other countries. The Australian Government awarded about $9 million in 2019 and 2020 for childhood cancer research, and there have been extraordinary advances in outcomes on some cancers. If we can get that funding, the UK can become a centre of excellence in the field.
Yesterday, Fiona sent me an email with a message from one of the families, who are going through an incredibly hard time with their son Joshua. Josh’s mum, Michelle Beresford-Smart, writes:
“Josh is still with us, but since August has been bedridden and no longer able to communicate. Completely paralysed by the end of September and blind in October and no longer able to swallow. About 10 days ago his breathing changed and this week he was put on a syringe driver. No life, just waiting for the inevitable. Horrendous. Josh…was diagnosed in August 2017 with a tremor in his right hand. The GP told us we were being paranoid! Just a trapped nerve!”
Nine days after the GP appointment, they were in Great Ormond Street Hospital. Michelle writes:
“My son was 15 at diagnosis. He is now 18. But, as you know, there aren’t any options here in the UK. He did radiation and chemo and then we were lucky enough to get him on the ONC201 trial in New York. We last visited in February 2020, then COVID struck and options were taken away.”
These incredible women told me their stories about making a change for other families and their children who will be affected with poise and passion, and today I am speaking up on behalf of all the families who deal with the tragedy of losing a child. I ask the Government to do the right thing and fund research on rare cancers to give future generations a fighting chance.
The majority of fundraising is done by parents and family-led charities. Earlier today, I heard that Alison Caplan, a constituent of the hon. Member for East Renfrewshire (Kirsten Oswald), lost her son Daniel, aged 17, to DIPG last week. He was a bright young lad who had his whole future ahead of him. His funeral is this Friday and the family hope to help other children who are diagnosed with cancer, especially DIPG.
These are people who have lost a child to a horrendous disease, but still they continue to fight for better outcomes for future generations. They deserve to have their voice heard and I am proud to have been able to speak for them today.
Eva’s treatment journey has at every twist and turn been thwarted due to inaccessibility, cost, lack of understanding and research, different healthcare regimes between England and Wales, and covid-19 restrictions. This brave little girl with a beautiful smile has the arms of Wrexham wrapped around her.
Further research in this field is required. Existing DIPG treatments available around the world are not available here. However, we have the desire in this country to fund research on this childhood cancer, as this petition proves. We have the talent in this country to undertake that task, and we have the best—the unique—national health service, free at the point of delivery. We cannot let children lose their childhoods, cut short due to funding and research issues. Let us hope that this debate starts a reassessment of how we look at children’s cancer going forward.
For children such as Izzy, care is inadequate, and other, more practical factors increased the problems that Izzy and Tracey came up against in trying to get access to treatment. As Izzy was 16, she was not classed as a paediatric patient or an adult. That put her in administrative limbo. Hospitals were unaware of where she should be treated, who should treat her and who would foot the bill. That left Tracey with the extra burden of chasing hospitals for treatment and looking for counselling and other support. Tracey was often the one who had to find out where Izzy could receive care and what sort of care she could receive. That was yet another stress that she should not have had to deal with.
It goes without saying that caring for a child with cancer is phenomenally tough. Those parents care for their children emotionally and practically while trying to come to terms with the intricacies of their illnesses, all the while having to process that themselves and realising that they face what every parent dreads more than anything: outliving their own children. They should not be faced with added stresses and tasks because their children fall into the limbo between paediatric and adult care. That was also frustrating for the senior clinicians in charge of Izzy’s case, who felt that they were going round in circles over who would treat her.
Tracey received invaluable support from the Teenage Cancer Trust, CLIC Sargent and the Tŷ Hafan hospice. Those charities do incredible work for children with cancer, helping children and their families to navigate the medical and emotional sides of their illnesses. Without those charities, families such as Izzy’s would be completely lost. That is a failure on the part of the state to provide adequate care and funding for children with cancer. Izzy was given a dignified death thanks to the Tŷ Hafan hospice, which relies entirely on charity.
I say this to the Minister: three children died last week from DIPG alone. That is three families who now face a Christmas of grief. We must do more. The ring-fenced funding is not enough for a country that prides itself on scientific research. We could be leading the way, but we have failed to do enough. Some things go beyond politics, and this should be one of them. Few of us can imagine what Izzy’s family have gone through, but we must do more to stop others experiencing the same.
I want to end by thanking Izzy’s mother, Tracey, for allowing me to share her story, for her bravery and, above all, for her desire to ensure that no other family goes through what hers have been through. She said that she is praying that this is the start of a change that gives hope to families such as hers. I hope the Government listen and bring about real change.
“we have invested £1bn per year in health research through the National Institute for Health Research”.
Expenditure in this area is the largest it has ever been. I remember working with the Tessa Jowell Brain Cancer Mission. It was a privilege to work with Tessa and her daughter Jess, who were very forceful ladies and very good at lobbying Ministers, including me. We were able to promise an extra £40 million over five years for brain tumour research as part of the mission’s work. That included funding for childhood cancers.
One key point of their work was to stimulate the research market in this area, to see new research propositions come forward. Tessa understood that acutely. It is never the case that we have enough money for health research. I suggest that we need both investment and strategy. That is why I was struck by this particular recommendation in the campaign that led to this petition, which the hon. Member for Gower (Tonia Antoniazzi) touched on.
The UK does have excellent collaborative research at our medical facilities, but we must assign sufficient funding to DIPG research and implementation of the new treatments. I urge the Government to convene and appoint special UK experts directly to centralise efforts and bring forward that new prioritisation strategy, so that we can stimulate the research market, as Tessa and her campaign urged me to do when I was sitting in the Minister’s position.
The Minister cannot wave a magic wand and make this go away—I have sat in her place enough times to know that. However, we can agree to make this change and to work together to finally face DIPG and start to turn the corner, with the collaborative strategy that I have mentioned. That is the hope—to reiterate that word—that these families want. I do not think that is too much to ask.
Globally, we have poured billions into finding a vaccine for covid-19, because the will has been there to do so. We need a similar will and focus on cancer. I recognise that the Government have invested millions of pounds into cancer research, but amid the myriad cancer types that exist, we must ensure that childhood cancer receives the specific attention that it demands. I fully support the call for ring-fenced funds for new research. We need a specific fund that targets childhood cancer, and particularly those cancers that have the lowest survival rates. We need transparency on specific cancer types and age data, and we also need exceptionalism and expediency. Every life lost is one too many.
The message of the last week, with the news of the covid vaccine, brought hope. It also highlighted that when science is supported, it can make the breakthroughs we need. The Government should do the same for cancer, because none of us knows whose family could be next.
The work of the APPG is extensive, but what is particularly relevant to this debate is a recent meeting with Midatech. Midatech is a British-based company, which in October announced
“‘encouraging’ headline results from a phase 1 study at the University of California… in patients with… (DIPG)”.
We were told that in a cohort of seven children with DIPG who took part in a clinical trial whereby a drug is delivered directly to the brain via a catheter, five survived beyond 12 months and three continue to be monitored.
As always, it is important that we carefully manage the expectations of families with very sick young ones. However, the purpose of this debate is not to present the problem, which is well documented, but to seek to identify what will unlock the solution. We are aware of 200 failed drug trials relating to DIPG. There are very few promising signs, which is where I turn to the Minister. Will she investigate why a British company is limited to running clinical trials in the US—in the case of Midatech, in California and New York? Will she work with the National Institute for Health Research to find a way of committing and ring-fencing funds directly for research into childhood cancers, as the petition demands? Will she work with the APPG and Midatech to navigate a way to set up clinical trials in the UK? It seems that the only option for many parents is to travel across the world, at enormous personal expense. I associate myself with the recommendations of my hon. Friend the Member for Winchester (Steve Brine), his work on the strategy and the need for absolute focus.
The APPG has been told repeatedly there is a lack of research and clinical trials in the area of brain cancer. That can only be properly addressed if we build the skills and expertise base, but that is very hard if the Government are not proactively promoting and funding such research. We start at a low base, but with the right focus, as we have all heard, there is an opportunity to provide the hope that these families so desperately need.
The Scottish Government have also done a great deal of work to improve cancer treatment in Scotland over the last decade. All these things matter, but we need a commitment from all of us not to let it lie for these young people, because although cancer is rarer in children and young people than in adults, it is often more complex and more difficult to treat.
Earlier this year, working with the Brain Tumour Charity —an organisation close to my heart—and with other Members, I tabled an early-day motion to raise awareness of DIPG. That continued focus has to be our priority, because only 10% of children with DIPG survive for more than two years following their diagnosis and research into brain tumours represents less than 3% of the UK’s cancer research budget. Those statistics should stop us all in our tracks, because in the midst of all the medical advances of recent years, affected families find that crushing and inexplicable.
All of us in the Chamber need to ensure that this area is a priority. We need to have more research and to think of it as we go forward. For Daniel Caplan and all the other children like him, and all their families, a cure really cannot wait.
Why does this matter? We have heard the stats in the debate, but these are the real stories behind the cases. Some 650 people in my constituency signed this petition to ask for transparency in the funding, for improvement in treatment options and for pulling together the clinical pathways that people who suffer in this situation have to go through. They ask for real understanding, for listening and for something to change. I am reminded of the quote:
“Your life is your message to the world. Make sure it’s inspiring.”
Isla’s message was truly that, and I hope the Government’s message on DIPG will be the same.