We shared a joke about us all going stir crazy, and the older chap who lives a few doors down, who I don’t really know, nodded at the poster in my window (see photo) and said: “Very amusing!” sparking off a discussion about having to teach the kids at home.
“Anyone who actually chooses to home school must be completely bonkers,” I said. His face went a bit odd, before he volunteered, in a tight voice: “I did, with all my kids.”
I suddenly found I had to retire into my own personal house-shaped gated community, sharpish. A strong cup of tea settled my nerves (as although the yard-arm is considerably lower than a few weeks ago, I couldn’t justify gin for at least another half an hour).
Inside, I decided upon some facts to share with you today, as this burbling is, after all, part of my 2.6 Challenge to try to help save PWSA UK and should actually be telling you some facts about my daughter’s condition: Prader-Willi Syndrome.
Here we go. Deep breath. (This is from the PWSA UK's website).
Prader-Willi Syndrome (PWS) is a rare, complex genetic disorder that affects people from birth and throughout their lives. It causes low muscle tone with consequent motor developmental delays, mild to moderate learning difficulties, incomplete sexual development, and emotional and social immaturity, which can lead to challenging behaviours. During childhood, an overwhelming and insatiable chronic appetite usually develops which, without rigorous food management and exercise regimes, leads to leads to food seeking, stealing, and life threatening obesity. PWS occurs randomly in about 1:22,000 births and it is estimated there are about 2,000 people living with PWS in the UK.
Blimey. That’s a lot, innit. Just 100 words, but... a lot. Words with some series bombpower. In subsequent blogs I’ll explain and defuse each bomb like Sandra Bullock in Speed. No, wait, she drove the bus, didn’t she? And after five weeks of lockdown I’m probably more like the mad bomber, Dennis Hopper. So popquiz, hotshots. There’ll be a another blog on here tomorrow. If you read it faster than 50 words a minute, the bomb is armed. If you go below 50, it blows up. What do you do? What do you DO?
As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. THANK YOU to everyone who has already donated! If you can spare just 26p, it would be help. £2.60 would be brilliant. £26 may earn you a sexual favour after social distancing is relaxed, although my dance card is getting a little full. Hubba hubba! Henry, I see you paid £25.99 to avoid your reward, which has crushed me, I tell you, crushed me.
As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. THANK YOU to everyone who has already donated! If you can spare just 26p, it would be help. £2.60 would be brilliant. £26 may earn you a sexual favour after social distancing is relaxed, although my dance card is getting a little full. Hubba hubba! Henry, I see you paid £25.99 to avoid your reward, which has crushed me, I tell you, crushed me.
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