WSS (Wiedemann Steiner Syndrome)
Donation protected
Our daughter Jessica was diagnosed with WSS (Wiedemann-Steiner Syndrome) about 18 months ago. WSS is a very rare gene deficiency disorder that currently affects approx 500 people worldwide and approx 40 people within the UK, with more and more people being diagnosed.
People affected by WSS have a range of features with varying severity. These include, feeding and digestion problems, seizures, heart abnormalities, developmental delay, reduction in muscle tone (hypotonia), distinctive facial features, intellectual disability, short stature, ADHD, behavioural issues and many other other symptoms.
As a baby Jessica struggled to meet all her milestones and still continues to struggle with some fine and gross motor skills, sensory issues, development/educational needs and other long-term health problems.
I am just hoping to raise a little money for the UK charity which will be used to help raise awareness and support families whose children are affected.
Any donations would be so much appreciated.
People affected by WSS have a range of features with varying severity. These include, feeding and digestion problems, seizures, heart abnormalities, developmental delay, reduction in muscle tone (hypotonia), distinctive facial features, intellectual disability, short stature, ADHD, behavioural issues and many other other symptoms.
As a baby Jessica struggled to meet all her milestones and still continues to struggle with some fine and gross motor skills, sensory issues, development/educational needs and other long-term health problems.
I am just hoping to raise a little money for the UK charity which will be used to help raise awareness and support families whose children are affected.
Any donations would be so much appreciated.
Organizer
Clare Clavering
Organizer
