Williams Syndrome group ‘blew my mind’
"There are 80 known cases currently in New Zealand and a lot of parents, siblings and caregivers all came to the camp. "
“Real knowledge is to know the extent of one’s ignorance”: Confucius. On Wellington Anniversary Weekend, I tripped over and fell surprisingly into knowledge of something I knew nothing about, and I am a better person for it.
Whilst Vintage Weekend was breaking records for resplendent revelry, a group of 120 very special people quietly slipped into Whanganui for their biennial camp.
The Williams Association of New Zealand had to wait four years for this camp due to Covid-19.
My role was to facilitate and host them at Whanganui Collegiate School which is where they had been patiently waiting to come to so they could use the fantastic facilities and experience the wonder of Whanganui while they were here.
If you, like me, have absolutely no knowledge of what Williams Syndrome is, I’m going to enlighten you because these people had a profound impact on me.
Williams Syndrome is a moderately variable genetic condition that, amongst other things, includes cognitive and developmental disabilities. Association president Christina Stilwell is even more specific in explaining it is a microdeletion at conception of chromosome seven.
“This chromosome is responsible for how we use elastin in our bodies and, as a consequence, there are a number of health issues for people who have this syndrome. Coronary stenosis of the aorta, poor eyesight, poor eating, hernias, hence the name. In New Zealand, it occurs in only two to four births each year and there is absolutely no cause.
It comes with immense responsibility and a rapid learning curve.
There are 80 known cases currently in New Zealand and a lot of parents, siblings and caregivers all came to the camp. These families know how to roll with the punches and they approach life with a sense of positivity that, once I’d experienced, made me aware of how much was missing in my own life.
I am a terminally single mum of an 18-year-old who is currently allergic to me.
Unlike hay fever, there is no antihistamine that will fix this allergy. I’m desperately hoping that as she gets older, this affliction may wane. I may get our doctor to prescribe a “time capsule” to hurry this up.
My point is there is a void where hugs and affection should be. I’m running the risk of turning into “Brittle Betty”. Cue the Williams Association of New Zealand.
The positive qualities of this amazing group of people far outweigh the negative and it blew my mind. Williams Syndrome people are colloquially called “Love Children”.
They are naturally affectionate, effusive and ebullient and have a love of life, music and people that is quite simply so lovely that you can’t help but have an affinity for them.
After living in an emotional abyss for such a long time, these wonderful people filled it to bursting with hugs, kind words and enthusiasm. This is one of their most fantastic traits.
They are incredibly emotionally aware of how people are feeling. It is their special gift.
Their EQ is off the scale which means, at times, they can be liable to get hurt (however, we are all susceptible to that) but it is the lifeblood of Williams’ people and I wasn’t going to let this experience go without taking some lessons on board.
Brittle Betty needs to be put out to pasture.
They picnicked in Kowhai Park, they swam, they went up our awa on the Waimarie, they went to our River Markets and they were grateful for every last moment.
They also took to the stage in the Prince Edward Auditorium and felt like rock stars for the night. I know they did because I judged the talent quest - the Williams’ version of Whanganui Idol.
In life, we should never stop learning.
The gratitude that I have for this wonderful group of people for teaching me about themselves and how they live is palpable. No doubt I’ll still accidentally continue to be ignorant of other things, but now Williams Syndrome isn’t one of them.