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Charity Meeting for PWSA UK

September 17, 2015  •  Leave a Comment

This week I have been at a meeting with PWSA UK, which stands for Prader-Willi Syndrome Association UK, a charity close to my heart as my nephew William (Bean) has it. I personally had only heard about it because Katie Price (Jordan) son Harvey has Prader-Willi Syndrome, as well as a few other medical problems too.

 

I went to the meeting with the guys from  Paradigm Creative as they are making a video for PWSA UK to help them with awareness and for fundraising. They chose to do this as they give something back to a chosen charity every year. Last year they did a Drive-in Movie for Forget Me Not Children's Hospice.

 

I am also going to be photographing their Christmas Event in the West Midlands on the 6th December 2015. I will be doing a photo booth style so everyone can have fun pictures taken at the event.

 

What is PWS?

Prader-Willi syndrome (often called PWS) is a complex medical condition that affects both males and females throughout their lives. People with PWS may need extra support with health and development and in the areas of education and work.

People with PWS may present some challenging learning and emotional behaviours and unusual medical issues. The syndrome typically causes low muscle tone with motor development delays, short stature if not treated with growth hormone, and incomplete sexual development. Most people with PWS are floppy at birth with initial difficulties in feeding, but then in early childhood begin to show increased appetite which can lead to excessive eating and life-threatening obesity.

Although PWS presents a group of features that occur together, it is important to remember that every child is an individual. Not every person with PWS will have all of these characteristics. Presentations will also vary in intensity from person to person. Increasingly, early diagnosis gives our children a more positive start with prompt intervention and sensible eating plans.

The name of the syndrome is derived from the names of two of the doctors who first described the pattern of characteristics associated with PWS in 1956.

 

I took the first photo's of my Nephew Bean and everyone loved them, he still had his feeding tube in but that doesn't make him any less gorgeous!

 

 


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