Lucia’s little sister, Camille, was diagnosed with an Ependymoma brain tumour in 2009, when she was just 26 months old and Lucia was three.
While Camille underwent treatment, Lucia, from Woodbridge, Suffolk, was cared for by her relatives, from her grandparents to aunts and uncles. Now, 16 years on, Lucia, now 20, has chosen to join Tom’s Trust as a Young Ambassador. She has already represented the charity at events, including a high-profile evening at the House of Lords, and is committed to continuing her support by sharing her story and giving siblings a voice that may otherwise be forgotten.
When reflecting on her journey, Lucia speaks openly about the hidden challenges siblings face: the mental health impact, the loneliness, the sudden shift in family dynamics, and growing up too quickly.
Her Tom’s Trust Young Ambassador role will see Lucia support other siblings like herself, who have been indirectly impacted by a brain tumour diagnosis, by sharing her story, raising awareness and taking part in further events with the charity.
Camille, Lucia & younger brother Jude
Lucia’s story
Lucia recalled when she and her parents had first realised that Camille was becoming unwell. Over a period of a few weeks, Camille’s appetite had disappeared, she was weakened and was being constantly sick and sleeping a lot more than usual, causing large amounts of stress amongst the family, several trips to the doctors and hospital followed with a misdiagnosis of celiac disease.
After insisting that Camile underwent more tests, the family were told, after an MRI scan, that Camille had a large brain tumour.
The diagnosis shattered the family, and Lucia was far too young to grasp what it all meant. They did their best to explain, but for Lucia, all she could sense was that everything around her was changing.
She recalls: “I never really remember how it was explained to me, I just remember not really understanding.
“The first time I really understood was when I first went to visit Camille in hospital after her first operation and she had tubes coming out of everywhere – a few weeks later she started losing her hair and was being sick all of the time, she stopped eating and was being fed by a tube. But I don’t think I ever really understood how serious it was.”
Between the ages of three and five, Lucia was largely protected from the details of Camille’s journey by her parents, who aimed to minimise the impact on her early years. While she wasn’t fully aware of the situation, she still experienced some of the changes and disruptions that followed Camille’s diagnosis.
Lucia says: “My parents tried to protect me from it all, so I didn’t really understand what was happening. I just remember everyone being really upset and not knowing why.”
Despite Martin and Hayley’s (Lucia & Camille’s parents) dedication to both their daughters, Lucia understood the need to split their attention, and she and Camille still grew up very close. However, due to the cognitive and physical challenges caused by major surgeries, treatment and the tumour itself, Lucia remembers there being some changes to their relationship during her childhood – but that didn’t break their bond.
She recalls: “I probably didn’t understand that as I was running around and jumping about, Camille couldn’t do it as much. She would probably be quite frustrated with the fact that she couldn’t fling herself about like I could – but we’d squabble like normal siblings.
“It didn’t really affect our relationship at the time. We were still just normal siblings – but things were so much more difficult for Camille to navigate, she stopped walking, so we got used to playing on the floor – we just adjusted.”
As the family navigated Camille’s diagnosis, Lucia remembers that there were a few organisations who recommended how best to address the situation and explain it to her – but ultimately, described there being ‘very little support’ from anyone but their family with very little external help. Lucia remembers staying with her grandparents a lot, and her aunts and uncles taking her away for weekends at a time, visiting Camille in Liverpool when she had her surgery there.
Despite Lucia not fully grasping the full extent of Camille’s diagnosis as a child, she still found herself affected in other ways – such as having to grow up far quicker than other children her age would have.
“My dad always said I was like a grown up at the age of 5,” she recalls. “I feel like I’ve grown up a lot quicker than a lot of other people would. It’s made me very independent, very motivated a lot of the time.”
Unfortunately, the true impact of her and Camille’s childhood had eventually caught up with Lucia in her teen years, where she began processing things properly – leading her to have feelings of anxiety and depression and having to seek therapy to find the support she never had.
Whilst Lucia continued to process this later in life, she discovered a newfound passion to help people, which she demonstrated by studying law, and found herself prioritising family far more, too. Although the journey to understanding has been long, Lucia acknowledges that it hasn’t been linear.
She says: “It’s been difficult because when you’re going from ages 3 to 20, there’s lots of different levels of understanding. There were stages where I was just really angry and depressed because even now, Camille will always have to have more attention than anyone else.
“Growing up without the level of attention that a lot of other kids did get was really hard.”
Further into Camille’s treatment, Tom’s Trust was founded, and their clinical psychologist team worked with Camille and her family to both process what they had all been through and prepare for what was to come. As Martin became more involved with the charity, Lucia began to understand more about what they did and realised how they could’ve helped if they’d existed during the early stages of Camille’s diagnosis and treatment.
Lucia said: “I think there would’ve been a much greater level of understanding if Tom’s Trust was there back then, because at the time I had no idea what was going on. There was never that level of support from the hospital back then.
“I would’ve really appreciated it growing up, just to have someone to speak to.”
Despite the difficulty, Lucia continues talking about her experience to her parents and being as open as she can with all her friends, who she states have been a ‘great help’. And, through a traumatic childhood, Lucia notes that hers and Camille’s relationship, now at 20 and 18 years old, has been largely positive.
Lucia states: “Our relationship is really good. It’s different from what you’d expect a normal 20 and 18-year-old sister to be. We’re never going to bond over boys and makeup and stuff, but I like to think that she can speak to me, and she does quite a bit.”
When asked what advice she would give to other families going through what hers did, Lucia said: “My advice would be to just keep talking. It seems horrifically tedious but is so necessary to understanding sometimes how you even feel because you might not know until you’ve spoken about it with someone.”
As Lucia starts her journey as a Tom’s Trust Young Ambassador, she hopes to be an advocate – not only for families like her own, but also for siblings like herself. She’s also passionate about raising awareness of Tom’s Trust’s key initiatives, such as ‘The Sibling Toolkit’, which was the UK’s first ever resource designed to support the siblings of children with cancer.
She said: “I think siblings often feel forgotten, even if they haven’t necessarily been, and it’s hard to feel prioritised or wanted in the household when all of this is going on. To have someone to speak to you alone is so important, to have that undivided attention.”
By reflecting on and sharing her story, Lucia hopes that others like her will feel less alone in what is normally a very scary and uncertain time.
She expresses: “I’m really excited to be a Young Ambassador for Tom’s Trust. I’m excited to tell my story and I just want people to know that if they can relate there’s other people out there who have been through the same thing.”
Laura Bowditch, Family Liaison Coordinator at Tom’s Trust says: “We are so pleased to have Lucia on board as a Young Ambassador. Her honesty, dedication and passion for Tom’s Trust is truly inspiring, and we cannot wait to see all that she does.”