Lauren's story shows how hearing and sight issues eventually led to a mitochondrial disease diagnosis, and how further symptoms evolved over time.
I was born at 37 weeks as I had stopped growing at 35 weeks. I was very small but healthy – I weighed 6 pounds.
I kept failing my hearing tests, but nobody acted on this until I went to nursery where I failed another test. I was referred to the hospital where they told my mum I was in fact deaf and needed hearing aids in both ears.
Not long after, I started to struggle to see properly and found out that my eyes had no movement in them. With my hearing and eye problems, the hospital put me under a paediatric doctor who began tests.
… after having lots of blood tests and eventually a muscle biopsy.
My mum and dad had to do a DNA test to find out what kind of mito I had. This was when we found out that I was born with mitochondrial disease, and I’d inherited it from my mum having two genetic faults and my dad having one genetic fault.
My mitochondrial disease variant is caused by the RRM2B gene, which is one of the rarer mito conditions.
At 14, I had my first operation for my mito, which was a double operation as I had my eyelids lifted and a peg feeding tube inserted into my stomach. Then, when I was 16, I had to have another operation to have my cochlear implants fitted on both sides. I had to go two months not hearing anything, as the operation site had to heal.
Everything was going well until I had a major absent seizure which led to me spending three weeks in hospital in September 2023. My mum had to leave work and become my primary caregiver as I could no longer be left alone.
They did lots of tests and found out that I was having problems with my calcium levels, and my heart rate was irregular, so they give me anti-seizure medication and referred me to the endocrinologist department. This led to me having weekly blood tests and calcium infusions for a year.
I finally got to see my consultant at the endocrinology department and was told I had hypoparathyroidism my body no longer makes calcium to keep my bones strong, and this also has affected my heart.
I am now 22 years old, and I enjoy going out on my mobility scooter. I use a stairlift at home to help me access my bedroom and wet room.
I enjoy arts and crafts, playing games and watching TikTok on my iPad, and shopping! I also love colouring and spending time with my nephew.
…by getting my story out there. Having my own mito mission is a great way for me to do that.
Any funds raised by Lauren’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 Lauren’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Lauren’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!
