Thanks for taking the time to visit my JustGiving page.

Antony quietly slipped away when his heart stopped beating on July 15th. Just like his birth were left with no clear answers about his health, as up until that point he was showing no signs of illness or distress. 

Until Antony was born 8 years ago I’d never heard of undiagnosed syndromes and it was only when we were introduced to SWAN Uk (syndromes without a name) that we discovered how many thousands of other people this effects. 

For most people it’s something we just come to accept as we focus on caring for our little SWAN’s,  however it adds a layer of complexity to an already difficult situation and often even the doctors and experts are unable to guide without a road map to follow. 

Genetic alliance (SWAN Uk) focuses on helping families like ours in getting diagnosis, access to care, research and treatments. In loving memory of Antony and to support them in continuing this important work we have set up this fundraising page 

Genetic alliance runs two long standing projects:

– Rare Disease UK: A campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that people and families living with rare conditions have access to a final diagnosis, coordinated care and specialist care and treatment. 
– SWAN UK: The only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed.