Justine's

Mito Mission

Based in Stoke, Staffordshire

Justine: 1974 - 2024

Justine's mission is being run by her loving family. Her story highlights the devastation that mito brings and the complex care issues that can arise for those impacted.

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Story

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Mission

Justine's

Story.

As told by her husband Jason

December
2024

Jason, from Stoke, lost his beloved wife Justine to MELAS 3243, a variant of mitochondrial disease, in April 2024 at just age 49. Together, they have three sons, Ryan (21), Sam (20), and Jayden (14), all of whom have also been diagnosed with MELAS. While Ryan and Jayden are currently asymptomatic, Sam has started experiencing symptoms, following in his mother’s footsteps.

Before MELAS took hold, Justine was a warm, homely person, who absolutely adored her three boys. “They were the apple of her eye,” Jason says. Justine found her greatest joy in being a mum, and family was at the heart of her life. The family enjoyed caravan holidays together, and Justine especially loved walking and caring for their dog—affectionately known as the ‘VID,’ or Very Important Dog. She also enjoyed catching up on her soaps and reading. This vibrant, loving life began to shift as MELAS gradually changed everything.

In the last two years of her life,

MELAS progressed significantly in Justine.

This lead to repeated hospital stays and increasing challenges. “I just want people with mitochondrial disease to have a better experience than we did,” says Jason. He feels strongly that medical professionals need more education on the condition, as the family often faced poor communication and inconsistent care, which added immense stress to their journey. Jason, now well-versed in the condition, reflects on their journey with the medical system. He’s committed to raising awareness about mitochondrial disease and is particularly passionate about improving medical education, as he feels the lack of coordinated care severely impacted Justine’s experience.

Justine was under the care of specialists in Newcastle, but Jason felt they received minimal support. “It was as though there was no one overseeing her care as a whole,” he said. Justine’s health challenges began early, becoming insulin-dependent in her mid-20s, and around 18 years ago, she also lost her hearing. However, it wasn’t until 2017 that she became seriously ill and was initially misdiagnosed with encephalitis and an autoimmune disorder. In 2018, when their son Sam developed similar symptoms, doctors quickly recognised mitochondrial disease and directed the family to specialists in Birmingham. Justine’s official diagnosis finally came in 2019.

Unfortunately, this diagnosis didn’t result in the level of care and support they expected. In early 2020, as the COVID pandemic emerged, Justine missed a crucial appointment in Newcastle. Though video appointments were offered, both Justine and Jason struggled with the technology, and the family lost an important link to her specialist care. Her condition continued to worsen, and in 2022, she was admitted to the hospital again.

By 2022, she was admitted to hospital again, but due to a cochlear implant, she was unable to have an MRI, which compounded the difficulty of getting clear answers about her condition. During this time, the lack of communication between departments was an ongoing challenge. One critical point, he recalls, was when her records were transferred to a different facility in Nottingham without a clear plan or proper family consultation. Justine was in and out of the hospital frequently, battling new symptoms and facing long stretches with little to no improvement.

In early 2024, Justine was admitted to the kidney unit in March. Jason noticed a significant decline during this stay, particularly in her ability to swallow. Justine then developed sepsis, and Jason was called to the hospital and given the devastating news that the next 48 hours would be critical. If she didn’t recover, the only option would be palliative care. Justine overcame the sepsis and was transferred to the acute stroke ward. However, by the end of the month, she began experiencing breathing difficulties and never regained consciousness. Justine sadly passed away before the family could be by her bedside.

Their mission is to advocate for

better communicate & support

…for those affected by mitochondrial disease based on Jason’s experience with the healthcare system.

Jason believes that every patient should

have a dedicated point of contact

…who understands their complex needs and can coordinate across departments. While he acknowledges the support his sons now receive from specialist teams, he is determined to ensure that other families don’t face the same struggles.

“No one should have to go through what we went through.

I just hope our story can make a difference.”

Get involved and

support Justine's cause.

Any funds raised by Justine’s mission goes to My Mito Mission’s
central funds to be granted towards research and support projects
to benefit everyone affected by mito.

Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to holding a bake sale, hosting a collecting can to giving out Justine’s Mito Mission leaflets – there are so many ways in which you can get involved.

If you’d simply like to donate to Justine’s mission, choose a way that suits you below.

Be a Part of Project 1000 Strong

Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.

Strengthening the future of mito awareness, support and research.

We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.