Hello. I’m Lillia, I’m 9 and live in Sheffield with my mummy, daddy and my big brother Harrison. I love the colour pink & Peppa Pig!
Lillia and her family live with the impact of mitochondrial disease every day. Please take a little time to read their story.
My partner of 11 years, Matt and I live in the Parson Cross area of Sheffield. We were thrilled to welcome Lillia in 2016 after a normal pregnancy and birth, a sister for Harrison, then aged 3.
When Lillia was 5 months old, I noticed some strange rapid eye movements.
When she didn’t reach subsequent milestones, further tests found some kidney anomalies but these didn’t really explain what was wrong and medically, she was a bit of a mystery. There was also some ‘brightening’ on Lillia’s MRI scans but we were told this could be connected to the eye problems.
After having tonsillitis at 3, Lillia sadly lost some of her development, including some Makaton she’d learned and her ability to weight-bear. Genetic testing in October 2020 found a fault with the OPA1 gene. A muscle biopsy in the following February brought the confirmation last October that Lillia has a form of Leigh’s Syndrome, a variant of mitochondrial disease. We were referred to specialists in Newcastle.
We’re still reeling, really, from how things have progressed.
What keeps us focused positively, despite the inevitable ‘wobbles’, is Lillia herself. She is the most delightful little girl and always smiling and happy. She loves school and adores socialising with other children and has the most amazing relationship with her big brother. The colour pink and Peppa Pig are also firm favourites!
Together we can help to raise hopes of a cure – not only for our gorgeous little girl, but for everyone who is affected by mitochondria disease.
Keeping busy doing something so constructive, which will help raise awareness and funds in our daughter’s name will be almost like therapy in itself.
Whether you support Lillia’s mission, any other single mission or My Mito Mission as a whole – it’s all the same great cause.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to hosting a bake sale, giving out Lillia’s Mito Mission leaflets to finding a home for a collecting can – there are so many ways in which you can get involved.
If you’d simply like to donate to Lillia’s mission, choose a way that suits you below.
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.
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.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
We’d love your support with our fundraising… and we can provide supporting materials. Just ask!
Fundraise and shop!
Other ways you can support us
Visit our Support Us page for more inspiration!
