80 / 100

Eleanor – Sotos Syndrome

Eleanor
Eleanor is 14 years old and she lives for music and dance. Her absolute passion is musical theatre. She takes many dance classes, loves to sing, and plays the surdo drum in a carnival crew.

Sotos Syndrome

Eleanor has Sotos Syndrome which affects only 1 in 14,000 people.

Sotos brings many challenges and for Eleanor this has meant, developmental and social delay, ADHD, Autism, poor muscle tone, a heart condition (ASD) that required surgery, visual impairment and conductive hearing loss. For more information regarding Sotos please visit Sotos Syndrome Support Association or Child Growth Foundation.

Eleanor is always wearing the classic Sotos smile and is often described as inspirational, as her enthusiasm, dedication and determination to achieve something is incredible, from learning to ride a bike, something she was told she may never achieve, to practising a dance step she is struggling to master for hours. She has certainly made her family and friends view the world differently and lives by the Unique Feet motto “Life may not be the party we hoped for, but while we are here, we should dance!”

 

Support

Eleanor and her family are lucky to not only have the support from close friends and family, but also a network of Sotos families who they go away with each year. They are also one of the founding members of Cambridge Rare Disease Network’s #UniqueFeet community. They feel privileged to be part of this special group. Eleanor loves joining in the activities and in her words “has made friends with others who truly understand her.”