Hi my names Melissa and I am running the Nottingham half marathon running festival on August 4th to raise money and awareness for the charity SWAN UK (syndromes without a name) which supports families affected by a genetic condition so rare it often remains undiagnosed. The charity is very close to my heart as I have two children who are SWANs and remain undiagnosed, my eldest Aubree is nearly 10 she is non mobile, non verbal with epilepsy and despite being tested on since the age of 6months we are still no closer to getting a diagnosis.

My youngest child Buzz-Emerson has just turned four and he shares the same struggles as Aubree.

Being part of a charity like SWAN brings hope and support to families like mine.

They are the only dedicated support network for SWAN families in the UK and are run by the charity Genetic Alliance UK.

SWAN UK's aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. They work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis - bringing families together in a supportive community who understand the unique challenges of life without a diagnosis.