How Founding a Charity Helped This Mum Navigate Life After Losing Her Daughter

Image Source: Aoife’s Bubbles | Eilish and Aoife at the fair.

For many, charities play such a vital role in helping them navigate a difficult period of their life. Whether it’s homelessness, mental health struggles or financial hardship, there really is a charity out there to help you cope with any situation you might be facing and perhaps there’s already one that you hold close to your heart for doing just that.

For every charity that exists, there’s an important story behind why it was created. For Aoife’s Bubbles founder Eilish Flannagan, her reason was her daughter Aoife. Aoife was a free-spirited three year old, full of energy and bursting with personality. It was in 2019 that her mummy noticed something was wrong.

After more than 10 visits to healthcare professionals, where her symptoms were continuously missed or misdiagnosed, Aoife was rushed to Great Ormond Street Hospital and eventually diagnosed with germ cell cancer. Five days later, after her first round of chemotherapy, Aoife passed away.

It was in the hours after Aoife’s passing that Eilish first started thinking about founding a charity in her honour. Not only to keep Aoife’s legacy alive but to ensure no other children had to go through the same thing. “I promised her everyone would know her name,” Eilish shared.

“It was in the hours after Aoife’s passing, I knew I wanted to found her charity, to stop this from happening to other children and for Aoife to live on with me.”

Founded in 2020, Aoife’s Bubbles is the UK’s only charity dedicated to raising awareness of germ cell cancer in children. Created by Eilish, with help from her closest friends and family, Aoife’s Bubbles aims to educate as many people as possible about the symptoms, diagnosis and effect of the disease.

Germ cell cancer is a cancer that usually develops in the ovaries or testes. However, when the germ cell tumours fail to migrate to the correct part of the body, it’s possible that they will form new tumours in other parts of the body. These are called extragonadal tumours and are frequently found in the bottom of the spine, the brain, chest or abdomen.

While the cause is unknown, anyone can be impacted by germ cell cancer. Currently, around 3% of childhood cancer diagnoses are germ cell cancer related, with 40-50 children being diagnosed with a germ cell cancer in the UK every year.

In children, the symptoms of germ cell cancer include nausea, unexplained bruising and lumps, headaches, weight loss, vision disturbance, constipation, night sweats and mood swings. After doctors dismissed many of these symptoms in Aoife, it was the nagging feeling in Eilish’s stomach that kept her continuously taking her daughter back until she had an answer. In Aoife’s case, she was eventually diagnosed following a simple blood test which looks at AFP tumour markers. “That simple blood test was all it took. Germ cell cancer is around 90% reactive to chemotherapy if caught early enough, so I strongly believe that if Aoife had been diagnosed earlier, she would still be here,” Eilish tells PS UK.

It’s a common misconception that childhood cancer is rare. It’s actually the biggest cause of death-by-disease in children. Changing how childhood cancer is viewed is one of the biggest challenges Aoife’s Bubbles faces. “We work tirelessly to drop the title ‘rare’ – it gives the impression that children’s symptoms are something else, when we should be checking for cancer in children as a reason for unexplainable symptoms,” Eilish explains.

There are only four treatment options available to children with cancer today, all of which were developed and tested on adults. This means that 95% of children that survive cancer develop secondary conditions, including further cancers or infertility and are 15 times more likely to develop congestive heart failure.

Image Source: Aoife’s Bubbles | Aoife with Bubbles.

Named after Bubbles, Aoife’s pony, Aoife’s Bubbles helps provide acts of joy and opportunities for respite for children with all types of cancer. Additionally, they support the parents of those diagnosed, campaign for awareness and have provided crucial funding to Institute of Cancer Research’s e-SMART trial as well as the upcoming liquid biopsy research, which focuses on finding less invasive diagnosis and improved treatment options for children.

“Aoife and Bubbles were inseparable in life. So I knew that they would make the best cancer fighting team even in Aoife’s tragic death.”

Not only has founding the charity had a massive impact on children and families going through situations similar to Aoife’s, it’s also had a huge part to play in Eilish’s own grieving journey. “Aoife’s charity saved me when I needed saving, it is my last living thing I can do for Aoife.”

Since founding Aoife’s Bubbles, Eilish has welcomed two little boys to her family, crediting the charity as a tool which helped her survive to be a mummy again. “Founding the charity gave me something to focus on,” she explains. In the initial stages, Eilish found that having the right people around her was crucial. “The charity is so emotive and a huge passion of mine, you need a team around you who will understand this,” she explained. For anyone looking to found their own charity, Eilish wants to encourage people to understand the commitment it takes: “It can be a lot of work, and you’ll need people you can rely on and completely trust.”

Image Source: Aoife’s Bubbles | Cody with an image of his sister, Aoife.

There are plenty of ways to support Aoife’s Bubbles. From making a small donation, attending one of their fundraising events, or even just knowing and sharing the symptoms of childhood cancer with those around you.

When asked if there was a closing message she would like to share Eilish said: “I am just a normal mummy and if this tragedy can happen to me – it can happen to anyone.” Adding that she implores people to know the symptoms of childhood cancer and “to use Aoife’s story to empower you. That is the fitting legacy for my little girl.”

If you would like to donate to Aoife’s Bubbles you can visit their website here and follow them on Facebook, TikTok or LinkedIn. Alternatively, they are currently exploring corporate sponsorship options and you can reach out to trustee and fundraising manager Yazmin Godfrey on yazzii@aoifesbubbles.co.uk to find out more.

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