The Niamh Jobson Research Fund
Raising vital funds for life saving research into osteosarcoma.
Niamh's Story
Niamh Elizabeth Jobson was just 22 years old when she died on 17th of January 2025 in Hong Kong, the city in which she was born, a mere five days short of her 23rd birthday.
Her cause of death was recorded as pneumonia but in reality she had been diagnosed with metastatic Osteosarcoma seven years earlier in 2018 when she was just 16-years-old. The disease was in her lungs even then.
It is difficult to express in any language the wonder of our girl or the widespread, earth-shattering devastation losing her has brought to her devoted family and friends, more so for her. We feel it for her - such was her zest for life, vision for her future and overall brilliance and beauty - an amazing human. She was and remains such a Queen. We are forever in her debt. Simply being one of her “people” felt like basking in the sun.
And so, with an unwavering dedication to continue to look after her, we have set up the Niamh Jobson Research Fund which will raise funds to find a cure and kinder treatments for Osteosarcoma, the most common bone cancer in children and young people.
Niamh’s compassion for others was limitless even in her most difficult of days and we know that she was determined not to let others have to endure the grueling and barbaric surgeries and treatments which she had to withstand again and again for many years.
Niamh was the eldest of three and was the mightiest of big sisters to Finn and Betsy-Mae, who are two and seven years younger than her respectively. She had an extremely varied childhood having been born in Chai Wan, Hong Kong in 2002 and moving with her parents back to Glasgow in 2004 for her brother, Finn to be born. After moving to the bucolic idyll of the Renfrewshire village of Kilmalcolm, her sister Betsy-Mae arrived in 2009.
The moves didn’t end there and in 2013, Niamh now at high school and with a great love of the Highlands, moved to Mallaig High School where she boarded during the week. Niamh’s dad, a former resident of the Inner Hebridean Isle of Eigg, gradually moved the family back there over the coming years with all three eventually attending Mallaig High School.
It was in 2017 and early into 2018 when Niamh started to feel unwell from time to time. As a school boarder, she mostly attended a GP on the mainland. With repeated visits, came more confusion and her left knee had started to become intermittently painful.
As a 16 year old, the GP would not speak to her parents without permission and if she forgot or wasn’t asked, had to repeatedly return and give permission so the the surgery would speak to her parents. It was very frustrating and fractious, especially when at one point, she was prescribed Prozac as it was suggested her symptoms were mental health related.
It wasn’t until the end of 2018 when she visited A&E in Glasgow, that she was admitted to hospital and told tumours had been detected in her knee and lungs. She was sent for scans and tests and brought back to hospital on her 17th birthday, the 22nd January 2019 to be told she had Stage 4 Metastatic Osteosarcoma which was in her knee and her lung and she would require to spend the next ten months in hospital for the standard schedule of treatment for kids in her position.
The wheels were set in motion. She had keyhole surgery to remove her eggs to be frozen in the event that she survived but chemotherapy had rendered her infertile. She then had ten weeks of three different kinds of chemotherapy as an inpatient, followed by major surgery to resection her leg and replace those bones affected by disease with titanium, she had three quarters of her quad muscles removed and her hamstrings wrapped round the prosthetic and was told she had to have physio to help her mobility; followed by another 20 weeks of three different kinds of chemotherapy and finally a bilateral lung operation to remove “bits” they didn’t like.
To say it was barbaric and grueling would be a catastrophic understatement.
But what did Niamh do? Took it head on with total acceptance of her situation. She embraced the job of getting herself through it with such grace, humour, intelligence, compassion and beauty inside and out. It wasn’t just amazing to watch, she inspired so many people with her dogged determination and resilience.
Not once did she ask “why me?” Because her attitude was why shouldn’t it be her and she would rather it be her than her brother or sister or anyone else for that matter.
Battered, scarred, bruised and immuno-suppressed at the end of 2019, she returned home for some convalescence on the Isle of Eigg to a rapturous welcome when she stepped off the boat with her crutches keeping her steady.
Niamh had not just spent the best part of the last year enduring treatment, she had continued her studies in Audio Engineering, having enrolled at Riverside Music College in September 2018. Hooked up to her chemo pump, she sat exams in her bed, with her lecturer invigilating and the nurses helpfully posting “Exam in Progress. Do not enter” signs on the door. She also managed to squeeze in a theory test and pass her driving test too!
Niamh was an accomplished musician having already passed Higher and Advanced Higher Music by the time she was 16, playing variously the piano, bass guitar and fiddle. She attended Fèis Eige every year and showed up at Fèis nan Garbh Chriochan, Fèis na Mara and Blas festival among others. She made her Celtic Connections debut playing bass guitar with Dàimh in 2018 and loved having her “artist” pass. There was never any question of what she wanted to do with her life. Her passion and talent for music shone from her and informed almost everything she did.
Niamh was actually quiet and deeply intelligent although we can hear her laugh as we say this! She was a deep thinker and had a natural talent for writing, art and all things creative. At the tender age of 16, she had already written music reviews in publications, an article in the National newspaper and won a regional award for essay writing.
She had a talent for languages all round and was learning French and Korean as well as doing a TEFL course which she sadly didn’t get to complete. One of her drawings (of her beloved instruments!) eventually became a greetings card to raise funds for Fèis Eige. The list of her creative achievements could really go on and on and this doesn’t really touch on her career which she built from the ground up and which was going from strength to strength.
She had such creativity, flawless style and a keen eye for interior design too. She made everything she touched more beautiful, vibrant and vital and that includes all of us she left behind.
"We are all so much richer, fuller, more colourful and warm for having had her in our lives."
While the plan on her return to Eigg had been to have some rest and recovery before continuing to study, the outside world took over and the Covid Pandemic hit a few months later in March 2020. For the next 18 months or so, many things ground to a halt including physio and other regular appointments.
Niamh was required to attend every few months for scans but often had telephone appointments which would normally have been in person. She continued on and in late 2022 it became apparent that there was disease back in her lung.
She had further lung surgery in January 2023 which appeared yet again to remove the disease. Sadly, it was not to be and it returned in August of that year. This time the plan was to try radiotherapy. The disease did not respond well to radiotherapy although the inflammation looked to have improved.
Following surgery and radiotherapy, she was told that she could have chemotherapy but that her leg showed low level signs of infection and the only way she could have chemotherapy was if she had it amputated. It was “life or limb”.
Accordingly, in December 2023, without much of a fuss, she had her left leg amputated above the knee and started chemotherapy a short time later.
It was grueling and horrendously painful, Yet again, she was phenomenal. She researched prosthetics, bought herself limb art and styled her new “techno limb”. If only she could get rid of the disease in her lung, there would be no stopping her.
Sadly, the chemotherapy did not work, the kinase inhibitors she had after the chemotherapy didn’t work and at one point, she had a genetic assessment of her tumour which demonstrated an amplification of the YAP1 gene. Unfortunately, there was no idea from any corner of the globe about what to do with that information. She was then on the list for a clinical trial to start. She was charging on.
She also worked so hard to keep her immune system boosted and keep working on those cancer cells with mistletoe therapy, her love of good food, exercise, physio, cryotherapy, music, travel, laughter and a lot of love and joy…as well as indeed, her work.
Of course, Niamh had continued to keep focused on completing her degree and graduated with a BSc in Audio Engineering. She had unfortunately not managed at attend her graduation ceremony. Nevertheless, she had started to build her career as a DJ, producer and audio engineer in Glasgow. She had already posted some of her sets on sound cloud including one by invitation of a label in Japan, played some of her favourite clubs, become a resident at Return to Mono at her beloved Sub Club and started to make music with like-minded collaborators.
She and her musical soul sister, Kirsten, had secured themselves a little studio tucked above the Rumshack in the south side and performed a monthly radio show together. She had engaged in promos, photo shoots and had her sights set on travelling the world. Being born in Hong Kong, she had an affinity with all things Asian and especially loved the art and culture of Hong Kong, Japan and South Korea.
One of her greatest wishes was to get back to Hong Kong and she had also been looking forward to a trip to Berlin. In December 2024, she and her brother and her aunt went to Berlin to meet with her friends there and they had quite the adventure, managing to miss 6 flights!
With Niamh being keen to visit Hong Kong, it was arranged that Niamh, her brother, sister, bestie, Ellie and parents would all head out in January 2025 to visit our dearest Hong Kong “family” and friends, many of whom had been there when Niamh was born.
She took great delight in smelling that “HK air” and watching that skyline as we spent a day or two there before, unbelievably, both she and her brother became ill and were both hospitalised with pneumonia.
Niamh died at 5.23am on 17th January 2025 in hospital in Wan Chai, Hong Kong.
While we share this story with you, it is important to note that this happened in 2025.
The standard-of-care curative treatment for Osteosarcoma has not changed in more than 40 years despite this disease being the most common primary malignant bone tumour in children and young people.
It is unconscionable that this status can be allowed to continue.
The Niamh Jobson Research Fund, through the tireless work of the Bone Cancer Research Trust, will be dedicated to changing the reality of those diagnosed with Osteosarcoma for the better.
"Niamh has made the world a better place and will continue to do so forever more."
Jackie, Jonathan, Finn and Betsy-Mae - Niamh's family
