Adams Oliver Syndrome

I'm just me., Daisy.

I wear a hat.

I have Skull bone missing and sore skin. If you like my hat please don't walk on past without asking me, just ask! I don't like being stared at like an animal. I love talking to people, and my mum finds me very comical, so come chat...

But please, just please, my hats protecting me, please stop tapping my hat and saying "Nice hat".... Tap, Tap>>

Please don't tap my hat, I know its there..

If I fall, help me up..

I forget to hold hands,but I run really fast...

Please Remind be before we start our journey.. tell me theres a step,a post or a dip- woops i forgot??

'Hey' you all sounds the same, fuzzy, please look at me and speak, I'll teach you to sign!

I love life, every things amazing., Please tell me if theres danger, I want to try it all ..

I read with my feet!, strange in the libary!

So exciting., so much to do, to see, to experience ...

'Nice hat'., just please don't tap my hat... it actually hurts

I know its there, I wear it every day....

Let me be my best,just to explore and digest... ..

teach me , please I so want to know.

Let me see your lips,your fingers your toes..

watch your body language, I'll feel the flow...

Don't leave me out, Im just a kid with a hat,

Don't wanna be the left alone all on the mat!

Daisy's Mummy

Please be aware of disabilities not having labels, sorry Daisy doesn't fit the average criteria, we all different shape and sizes.

*****A little piece I wrote, I can see what Daisy feels as her eyes roll when the World doesn't understand

*** MORAL OF MY STORY... not everythings as it looks..

Holland is beautiful this time of year too.

Post dedicated to Kyron, We all fit.

Semicolon Project

Mortality statistics

Update of statistics, ummm, not great! http://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related

Daisy has now got hearing aids. Not something I was looking forward too. Since her fitting, and seeing Daisys face when she first put them in , I realised it was the best thing ever. I was so touched and emotional when Daisy heard the birds singing. I asked if she had heard them before , sadly she hadnt. Just pleased now she cn heard the small things we all take for granted. So proud of her ....

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Daisy safe room

Sorry, i havent blogged here for ages.. Basically ive put all my time and energy into raising enough funds to build daisy her very own room. So now, here she is with her toy hover, tidying her new safe space.
I will post picture of fund raising events and the process of the building work in due corse. Its a shame the 'services' couldnt provide what was adviced by daisys doctors. Luckerly the support from everyone involved has been amazing and i will be thanking everyone personaly. But finally for now i can nip to the loo, make a tea, even chat with my other children...knowing daisy is safe in her room. ... I can breath ... Xx

Building!

We can let go of a great big release of tention. I am pleased to say that we are now in the pisition to make a deposite for the works needed to build her safe room!! We still need to raise more but its so great to get the ball rolling. Work should start this month. !!! Any volenteers needed, clear area, dig footings, tidy up, build. What ever your skills may be message me with your details if you would like to lend a hand. Thanks

DAISY FIGHTS BACK: Norfolk fire and police to do battle in the boxing ring in aid of Norwich youngster - Topix

Charity Giving - Kerry Ogston's Fundraising Page

Not long now and I will be tackling the 3 peaks mountains, the biggest in the UK. Raising funds and awareness for Daisy and Adams Oliver syndrome.

Please follow the link to donate

Thanks xxxxx

Charity Giving - Kerry Ogston's Fundraiser Page

Donate (How too)

Please donate with the DONATE tab link above
Thank you

Shame the OT assessing us at home ignored Doctors recomendations , and then misplaced the documents stating the Doctors advice!! Due to this Im having to fund raise to keep Daisy safe, and follow Doctors orders!!

3 peaks

Training, Great time in the gym again with Lorna in the new life styles for living studio. We had a tough hour of 1-2-1 and .... boy am I starting to feel and see the difference!
I've lost 3lbs, COM'OM!!
I would never of trained like this without the 1-2-1 support from Lorna, all the diets and gym membership charges are a complete waist of money. If I new how much it would help to have these 1-2-1's I wish I did this years ago ...stupid fad diets...never again xx

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WE ALL FIT