WILLIAMS SYNDROME AWARENESS DAY 2016

20 May 2016  By GLOBI 
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May 20th is ‪Williams Syndrome‬ Awareness Day.

Williams Syndrome (WS) is a rare, non-hereditary genetic disorder, caused by a micro deletion of genes on the 7th chromosome. We celebrate this day with the publication of two articles, to raise awareness about this rare genetic condition. The first article focuses on the main features of Williams Syndrome and gives voice to two young individuals with Williams Syndrome. The second piece focuses on parents’s perspectives on Williams Syndrome.

We created 25 celebratory postcards collecting the stories and experiences shared with us by these individuals. Help us raise awareness by sharing them on social network.

“Williams Syndrome makes me have great empathy with people and I have a very positive attitude to life.”

“I wonder what the future holds for me. I really hope I will meet someone special and I would love to have a family one day. However I am aware that I could pass Williams Syndrome on to my children and I don’t know what the impact on them and my family would be.”

We found a lot of research focuses on the negative side… With Williams Syndrome being so unknown we also had lots of explaining to do to family, friends, work colleagues, doctors and strangers

It is also amazing when milestones are reached such as counting, learning a song, drawing a picture or talking, it may take them longer but it is very rewarding.

There are lots of good parts to have a child with Williams syndrome. From their amazing smile they have to their infectious laugh (they do use this to get out of trouble if they can)

“I love the fact that it makes me unique. It means people warm to me and want to be around me.”

It’s flipped my perspective on disabilities, I now believe that a child with a disability is just as miraculous and stunning as a child that does not, it’s just not in the conventional ways we all grow up on

“Perhaps having a disability has made me determined to focus on the good in life rather than the bad?”

Having read lots, seen various videos on the internet and most importantly spoken to Parents and Williams Syndrome individuals I've learned that although they all share some common characteristics and afflictions they also are massively different

“Sometimes I know that people look at me when I’m out – it hurts my feelings because I know I am a little bit different and I think people sometimes judge me”

Despite the many challenges that having a child with Williams Syndrome can bring, the love and joy that they bring to your life is the overwhelming emotion

“There are so many articles that highlight what it means you will not be able to do rather than what you can do!”

He has opened my eyes to what is important to me and made me re-prioritise aspects of my life. I have developed a thick skin but also a sensitivity to the fact that we are all different and have different talents and skills to be shared.

“I remember feeling different from my friends when I was younger because I had so many hospital appointments”

The pride we both get from hearing about his achievements at school and his accomplishments in general life is just amazing. The perspective on the world he has given us all is invaluable.

“I would also say that you should always count your blessings and look on the sunny side of life as much as possible!”

He lives in the moment… it’s fantastic, certainly something I've learned from him and enjoy watching

We have a very kind, gentle young man that just loves people

Even within the Williams Syndrome condition, there is huge variation of ability and all people, even with the same condition, need to be treated individually

“Williams Syndrome is the best thing ever”

“The hyperacusis caused by WS is the thing that upsets me most. It makes me different from my friends and people notice it. I have not been able to go to concerts and I can get easily upset by sudden unexpected noises when I am out and about”.

Our son brings a joy that we could never have imagined. He has helped us to see pleasure in very simple things. He has made me realise how complex the human body is and we can celebrate even the smallest of milestones in his life.

“Once they have met me they never forget me!”

One of the many things he has taught me to do already, to enjoy the moments we have with those in our life and to not be thinking/wanting to get on with the next thing in our busy day.

I embrace the difference in everybody now and see the whole person rather than their disability

 

 

Children & Youth Disability Education & Learning Health TOP







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