Category Archives: Uncategorized

Well time flies, Max’s now 11

Hi world, Max is now 11 and doing really well. Working on toileting now and communication, PECS, not huge progress yet but we keep at it.

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Fascinating insight into MWS genetics from Dr. Meredith Wilson

After seeing the increasingly broad spectrum of MWS people on the Facebook MWS Community page, I asked the legendary Dr. Meredith Wilson about the difference between a┬ámutation vs deletion of the ZEB2 gene. My rather naive question: “Does a gene … Continue reading

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Max’s hand-over-hand thinggy to help feeding!

Feeding can be a real issue. So we use this hand sling to hold Max’s spoon in place. It’s really easy to make – wetsuit fabric with a + cut in each end, for plastic spoon (he hates metal.) Wetsuit … Continue reading

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Signing vs PECS. Give him time and he’ll reward you.

We’ve found Max didn’t respond to learning sign language at all. Other kids with disabilities did better with signing, for example some of Max’s Lifestart friends with Down Syndrome picked it up and ran with it in spectacular fashion. Rather … Continue reading

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“I get much more from him than he gets from me…”

One of our lovely, amazing and talented carers, Bev in Sydney was like a ray of sun for Max. He loved hanging out with her and she taught him to click with his tongue – which he uses a lot … Continue reading

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A call to all MWS parents and carers for info and stories on this site

Hi to all. I’ve finally got time to update a few things here, and will be much more active. I’ll also have a look at the Facebook posts I know many are now doing. To those who’ve understandably asked why … Continue reading

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Max doing his thing

   

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Maxi at 7

It’s been ages. I know. Sorry – time got away! Maxi is now at a fabulous Special School, doing well and is charming all and sundry with his blonde cheeky ways and Zen attitude to life. Here’s Max hanging out … Continue reading

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Hi everyone and welcome to Mowilsi, the Mowat-Wilson Support Site

On Mowilsi we’re going to share information and stories about real people with Mowat-Wilson Syndrome. If you’re a parent or relative of a MWS child, know someone with MWS or are perhaps a carer, don’t hesitate to register and share … Continue reading

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