Elodie is an amazing, loving, little lady with a big heart and very happy nature. Unfortunately Elodie was born with a long list of difficulties but no formal diagnosis. As a family, we attend a lot of hospital appointments and have multiple specialists involved to make sure Elodie gets the help she needs. Being a parent to Elodie has been isolating at times and we have found it difficult to come to terms with what the future may hold for our beautiful daughter. That's why we want to raise awareness of such a brilliant cause that brings families together and helps others in our situation.

SWAN UK (syndromes without a name) supports families affected by a genetic condition so rare it often remains undiagnosed. 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.

Thanks for your support

Gary, Lucy, Elodie and Isadora