Maisie Warne Maisie_CFCSyndrome

Hello from the UK!


Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.


Maisie has a rasopathy called Cardio-facio-cutaneous Syndrome (CFCS) and there are around 1000 people globally with this rare diagnosis. We didn't know Maisie had CFCS before she was born in August 2019. Her official genetic diagnosis came in January 2020. It has been a journey into the unknown and continues to be!


For more information on CFCS, please visit https://www.cfcsyndrome.org/