Hello, I’m Danielle, 36, from Dundee and I’ve experienced what feels like 33 years of medical mayhem. This makes me passionate to improve the experiences of people who have a rare, genetic or undiagnosed condition.
I’ve always ‘failed to thrive’, had significant feeding issues, frequent hospitalisation and was tube fed until the age of 6. Growth hormone treatment from 6 to 16 dramatically improved my height, but not my weight. Psychological and physical causes were explored, with no answers.
At 16, Child and Adolescent Mental Health Service (CAMHS) suspected an eating disorder. This led to many soul-destroying years where my already vulnerable physical and mental health plummeted further. I endured long admissions to eating clinics far from home, force-feeding and seemingly constant battles with medical and mental health professionals.
… believing this my best option for a reasonable quality of life – to no avail.
A 2011 TV documentary, ‘Real Life Thumbelina’ featuring a girl with a rare form of dwarfism, Russel-Silver Syndrome (RSS), had me relating to many of her symptoms. Were mine genetic too? I fought to be included in the 100,000 Genome Project. It drew a blank.
That was in July 2014, during my 3rd year studying psychology at university.
In 2021 came a life-changing call.
Newcastle scientists had identified a mitochondrial disorder involving the NDUFB3 gene. The Genome Project database had one patient with two altered copies – me.
It was an overwhelming feeling to finally have an answer.
Conveying my story properly will take a book – which I’m in the process of writing!
As well as writing my book, I support my mum as much as my own health allows. Mum has different severe health issues and I support her as much as my own health allows and help out with my younger brother, Liam, 17 and sister Olivia who’s 12.
… for mitochondrial disease. And it’s also to bring hope and empowerment for anyone still experiencing a lack of diagnosis and a medical wilderness.
… especially from health professionals. Patients and families should be involved in all aspects of their care and treatment. And there needs to be improved communication between clinicians and patients.
Any funds raised by Danielle’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 Danielle’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Danielle’s mission, choose a way that suits you below.
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