Monday, 1 October 2018


I’m just about to hit the sack after a weekend of Prader-Willi wonder with my tribe. 

My tribe is a rare and beautiful thing. A weird and wonderful collection of tots, toddlers, kids, teenagers, and adults with the same rare chromosome disorder.

Also included in the clan are siblings, parents, grandparents, and a bunch of dedicated staff from the PWSA UK (the tribe-wrangling charity that organised the Family Weekend at a strangely-monikered New Forest holiday park). New faces, old friends, all with common jitters and joys.

The event is one my daughter is extremely obsessed with, and can’t bear to miss. Her anxiety - always potentially flammable - was on tinderbox tenterhooks this year, because we’d not been able to book our place until a few weeks ago. (I wasn’t going to dob her in here, but sod it: my mum was terminally ill, and my girl waited nearly an entire day after her nanna died before she could contain herself no longer and blurted out: “Does this mean we can go to Sandy Balls?” It was heart-breaking and kind of funny. This mix is not unusual amongst our tribe).

So this weekend we met up and chatted, played, painted stuff, took a train ride, cuddled dogs, paddled, swam, jacuzzied, walked some alpacas, barbecued, tombola-ed, frisbeed, giggled, cajoled, soothed, whispered, yelled, smiled, held hands, drank, quizzed, and hijacked the dance floor. 

These are all things that we can do elsewhere (apart from walking some alpacas, I’d struggle to do that any place else, I’ll give you that). We can go to parties, mix with other families, have a holiday, but what we don’t usually have is our tribe. The people who get it. The people who KNOW. And sometimes that's all you need.

Song is A Tribe Called Quest - Can I Kick It?

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