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

Each year thousands of children are born with a syndrome without a name, and without a diagnosis, families can be left with little to no support.

SWAN UK's mission is to make sure that no family is left behind.

Myself and my sister Eleanor are running Swansea Bay 10k to raise money for SWAN UK, an incredible charity that is close to our hearts.❤️

My niece Florence was born in 2022, and has been described as a medical mystery by her doctors. Since birth, Florence has undergone extensive testing to understand the cause of her challenges, which include being born with extra fingers, hypotonia and living with Global Developmental Delay. Despite all efforts, her condition remains undiagnosed.

SWAN UK is the only UK charity dedicated to supporting families affected by undiagnosed genetic conditions.

The charity has been a huge source of comfort, knowledge and community for us and we have attended 2 family fun events.

They also provide:

* Support services

* Funding for specialist services like the SWAN clinic in Cardiff

* Provide trusted information for parents and carers

* A community for other families like ours.

Anyone who has met Flossie knows just how special she is. Despite her challenges, she approaches life with joy, strength and kindness. She is the brightest light in our lives- we are doing this race for her, and the wonderful charity that supports us.

Every donation will make a huge difference, and we are so thankful for everyone’s generosity. Thank you from the bottom of our hearts.💕