1 in 17 people will be affected by a rare condition at some point in their lives. The average patient receives THREE misdiagnoses, consults with FIVE doctors and waits FOUR years before receiving a diagnosis. Some people have to wait over 20 years to receive a final diagnosis.

Rare Diseases UK cover a wealth of conditions that we day to day would have never even heard of, including Tracheobronchomalacia which is what my Mum discovered she had in 2023. TBM has led to my mum being in hospital for months on end, in intensive care numerous times and ventilated more times in a year than anyone would ever want in a lifetime. During all of this, she did not have her diagnosis until very late in the process and due to the condition being so rare, even experienced and seasoned medical professionals do not know how to treat or care for her.

I completed Race to the Stones in 2018- years before having my child and was at my fittest... this time round, I'm a little bigger, a little less fit and very tired from running around with an energetic toddler.... and the worst thing is, I said, 'I'll never do this again!'

I'm doing 100km for my Mum and for every person that needs support and treatments with rare diseases who deserve to be able to live their lives as fully as possible around their conditions.