The Noonan Syndrome Association of the U.K. has co-ordinated NS agencies in Australia, Spain, Ireland, Germany, Italy, Sweden, Peru & Switzerland to raise awareness for Noonan Syndrome online today and we wanted to help give it some coverage as we have three superheroes in Milton Keynes, living with the condition.
Noonan syndrome is a genetic condition that can cause a wide range of distinctive features and health problems.
The condition is present from before birth, although milder cases may not be diagnosed until a child gets older.
The most common features of Noonan syndrome are:
Unusual facial features, such as a broad forehead, drooping eyelids and a wider-than-usual distance between the eyes
Short stature (restricted growth)
Heart defects (congenital heart disease)
Hypermobility
Feeding issues
Learning issues
It's estimated that between 1 in 1,000 and 1 in 2,500 children are born with Noonan syndrome. It affects both sexes and all ethnic groups equally.
In Milton Keynes there are three boys (that we know of) who live with the condition and we would love you to reach out to us if you are also affected, so we can connect you with these superhero boys!
Rhys, Owain and Dale all wear a smile on their face, every single day, as they battle every day challenges that most of us take for granted.
Thankyou for taking the time to read this article, helping to raise awareness of Noonan Syndrome.
To find out more, please visit https://www.noonansyndrome.org.uk where you will find lots of the information including ways in which you can help to support the cause.
Comments