Harry Salm, a brave and imaginative eight-year-old from Huddersfield, began experiencing unusual symptoms in early 2022, including occasional vomiting, neck pain, and brief moments of imbalance. Initially dismissed as minor childhood illnesses, his symptoms worsened until a sudden paralytic episode at school led to an urgent hospital visit. A CT scan revealed a large brain tumour, requiring a 13-hour surgery followed by proton therapy in Germany and months of chemotherapy. Now two years post-treatment, Harry continues to face challenges but remains determined and full of spirit. Inspired by his journey, his family is raising funds for Brain Tumour Research, with his mum, Vicki, taking on the Trek Sahara challenge in 2025.
Here’s Harry’s story, as told by his mum, Vicki…
Harry is a curious and creative boy who loves dinosaurs, books, and science experiments. He has always had a vivid imagination, which has helped him navigate the challenges of his diagnosis and treatment. His younger sister, Millie, nicknamed “Moo”, is his biggest cheerleader, and together they bring so much joy to our family.
Harry’s journey began in early 2022 when he started experiencing strange symptoms. For about five weeks, he would vomit once a week, and after that, everything seemed fine. He also complained of neck pain after falling and hitting his neck on a cardboard LEGO box, which we now know was how he explained the acid or vomit rising in his throat, a result of the tumour. Occasionally, he was off balance, but only for a second or two. He would laugh about it, so we were unsure if he was just being silly. That was typical of Harry.
We took him to the doctor a couple of times, but they were not overly concerned. They checked his neck and found nothing wrong. They were also not worried about the vomiting, assuming it was a school bug. However, because we rarely took him in, they referred him to paediatrics at Leeds General Hospital as a precaution and recommended an eye test. Due to COVID delays, getting an optician appointment was difficult, and before we could attend either, Harry was diagnosed.
The turning point came in February when Harry’s school called to say he had sat down in the book corner and was effectively paralysed.
I had given birth to Millie just 14 days earlier via C-section and could not drive, so my husband, Andy, rushed to pick him up. It was a surreal moment. We thought it might be a bad infection or that he was pretending, being only five years old. By the time Andy arrived, Harry was back to normal, but we knew something was seriously wrong.
Because of COVID restrictions, only one parent could accompany Harry to A&E, so Andy took him to Huddersfield Royal Infirmary. Harry seemed fine at the hospital, playing with LEGO, walking around, and was generally bored. The doctors were not overly concerned, but Andy pushed for further investigation, and they transferred Harry to Calderdale Royal Hospital in Halifax.
Harry waited several hours before a doctor noticed something unusual at the back of his eyes and ordered a CT scan. We were initially hesitant due to the doctor explaining the radiation risks, but the doctor insisted it was necessary.
After the scan, Andy received the devastating news alone – Harry had a large brain tumour in the back of his head.
Andy said he felt like he was going to pass out and had to sit on the floor. Then, he had to call me and tell me the news. I have always felt for Andy because not only did he have to receive the news on his own, but he also had to relay it to me. He called, and I remember crying hysterically.
I phoned a friend, who drove Millie and me to the hospital just as Harry was being transferred by ambulance to Leeds Children’s Hospital for surgery. When they showed us the scans, the tumour was enormous – four centimetres at the back of his small head.
That night, Andy and I held Harry close, silently praying for a miracle. Throughout the night, he underwent various tests, and in the morning, the doctors prepped him for surgery, which lasted 13 hours. Terrified, we waited in the hospital waiting area the entire time, with newborn Millie by our side. We had nowhere to go and no room to wait in. Our wonderful friends supported us, looking after Millie when Harry came out of surgery so we could be with him immediately and speak to the doctors.
The surgery was successful, and I was surprised to see no bandages, just a small plaster from where they made the incision. After various biopsies, lumbar punctures, and an operation to fit a port (like a Hickman line), Harry was later diagnosed with a medulloblastoma, an aggressive and cancerous tumour. He spent one night in intensive care before he was moved to a ward, but more complications were yet to come.
Harry developed Posterior Fossa Syndrome, losing his ability to talk, walk, or even sit up.
Harry was initially unable to speak, and when he began relearning, his voice was robotic. Although it eventually returned to normal, it had permanently changed, and he faced more months of gruelling recovery. Five weeks after surgery, and after a mad rush to get Millie a passport (then five weeks old), we were flown to Essen, Germany, for 31 sessions of proton beam therapy as there were no available facilities in the UK. We spent three months there, and while the treatment was excellent, the language barrier added to the challenge.
After returning home, Harry began chemotherapy at Leeds Children’s Hospital. His last session was on Millie’s first birthday, 24 January 2023. Chemo was hard on him, sickness was a particular challenge, and at one point, his body wasn’t reacting to medication as expected, with uncontrollable vomiting causing confusion among doctors. Admissions to hospital were frequent and there were discussions regarding TBN (feeding via the blood stream) or PEG feeds as he was unable to tolerate water or feed.
At this point, Harry weighed just 16kg.
A clinical pharmacist eventually discovered that the crushed tablets weren’t being absorbed properly through his feeding tube. Once that was fixed, things improved, and I couldn’t be more grateful to the pharmacist – he saved Harry’s life with his discovery.
We are incredibly lucky to be where we are right now. Harry is thriving. I just dropped him off at Beavers, and after Easter, he will be moving up to Cubs. He is back in school full-time, swimming again, and loves playing with his friends.
Yet, despite all of this, there are still days when the emotions feel overwhelming. At times, I almost grieve the things that have changed, as if that means I am not grateful for what we do have. We have our amazing little boy, my sidekick, but life has changed, and with that comes a mix of emotions.
I miss Harry’s voice; it sounds so different now. I miss the carefree five-year-old who would climb everything in sight. I feel angry about the time he lost and the way his future has been altered. As a result of The Goblin and its treatments, Harry has an acquired brain injury, affecting his cognitive function and causing mobility challenges. While frontline treatment is over, the hospital visits and ongoing care continue, and the effects will last a lifetime.
This experience has been very hard on the whole family.
It drained us all, including Millie, who spent so much of her first months in and out of hospitals. She was such an unsettled baby at the time and would only fall asleep in our arms while we stood up. Now we are in a much better place. We have learned to take things one day at a time and to cherish every moment.
Harry will always be my inspiration; his courage and infectious smile keep us all strong. We cannot put into words our gratitude for the doctors and nurses. However, the treatment Harry and others like him receive has remained unchanged for decades. It was never designed for children and has led to lifelong, debilitating consequences.
That is why I am taking on the six-day Trek Sahara challenge for Brain Tumour Research on 27 March 2025, because I want to make a difference for other families facing this devastating disease. Harry’s journey has shown me the importance of research and funding, and I am determined to help change the future for other children like him and for families who may go through a similarly tough journey. Only together, can we find a cure.
Vicki Salm
March 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Harry’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.