Adams Oliver Syndrome

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2018-09-30T12:58:00.001+01:00

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2018-09-29T10:49:00.001+01:00

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2018-09-24T22:33:00.001+01:00

Fund by shopping online. Use easyfundraising to shop with over 3,300 retailers including Amazon, Argos, John Lewis, ASOS, Booking.com, eBay, Boden, and M&S. Every time you shop, you’ll raise a free donation for Daisy Chain Fund every time, it’s that easy! Find out more: https://www.easyfundraising.org.uk/causes/daisychainfund/

AOS

2018-09-24T14:50:00.003+01:00

Thankyou for your comments.

Family and friends sharing information about there experience of AOS is always appreciated.
I hope everyone is well. Sorry my posts here are not as often as I'd like , its none stop as Daisy gets older. :)

Making memories everyday ;)

Daisy now 8years old with her sisters Izzabelle and Ebony :)

Update 2017

2017-12-09T21:47:00.001+00:00

Daisy is 7 now.

She is still amazing and so are her much ed loved brother and sister.

Daisy has grown loads. She's as tall as her fellow class mates.
Educational she is progressing.

Daisy attends a special needs school. Her class is matched with other children that are at her level of learning.
Daisy is the only girl in her small class of 8 boys! Each child has there own curriculum of learning. Each child receive's tools and techniques that enables them to learn.
Daisy has developed so much since she started a statemented school.

She still talks and signs well to aid communication.
She is in many of the schools sports groups and teams.
Daisy has a fab Teacher and school support system. I'm really happy she came out of general mainstream.

Her head skull still has 3 different gaps where there is no skull bone at all.

Reports

2017-12-09T21:32:00.001+00:00

An update on an news press article that I read online
https://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related https://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related

2016 March update, Single parenting!

2016-04-12T00:05:00.000+01:00

Daisy's doing really well, still always smiling.
Her head has skin over it now, still looks weak and still opens up sometimes, but only skin deep. so its cope able.
Her feet are still deformed (said the Doctors!) I think there rather sweet!.
Heart is good and healthy.
She has regular speech and language Therapy, she did have hearing aids but doesn't get on well with them.
Daisy goes to a main steam school, she is statemented so gets alot of extra support.
She still wears her helmet at school, she's sad that she is different, but I tell her everyone is different in there own way. Daisy is extremely confident and out going..... She's going to rule the World one day. Love her to the moon and back.... xxx

Daisys Daddy gone.....

Its been a year since her Dad walked out of her life, no contact nothing. I just don't get that.
OK., so he got a new girlfriend, new life style (late nights, well paid jobs, holidays, and teenage type parties!) but..... He wanted this child, he didn't have children when we meet 7 years ago. The child he long for and doted on.... yet he walk. Without a word, no maintenance payments, no calls, no explanation. NOTHING. Sad that.
Always by your side Daisy
Love Mummy xxx

WE ALL FIT

2016-01-05T04:42:00.002+00:00

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

2014-04-08T18:14:00.000+01:00

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

Hearing aids

2014-04-04T11:16:00.000+01:00

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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2013-06-27T17:19:00.001+01:00

easysearch.org.uk | Supplied by easyfundraising | Powered by Yahoo!

Daisy safe room

2013-02-22T01:31:00.001+00:00

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!

2012-11-04T03:54:00.000+00:00

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

2012-11-04T03:12:00.001+00:00

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

2012-08-19T16:04:00.001+01:00

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)

2012-07-04T23:33:00.002+01:00

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

2012-07-04T12:30:00.000+01:00

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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2012-07-04T12:05:00.001+01:00

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BINGO Yoga

2012-06-25T22:27:00.002+01:00

I had my second training session with Lorna Taylor today , and after my 13mile charity walk with the Macmillian Cancer fundraisres on Friday at blinking midnight, I didnt think my body could handle much more.
Straight after setelling Daisy back to the Hamlet centre for her morning pre-school, I wizzed to the studio to hook up with Lorna, my personal trainer. Lorna worked my for an hour. Wow- that girl can bend. Yet again I feel great, I'm staring to enjoy my new fiitty life!.. Its all go,go go and I'm just ge,ge, getting on with it. Spirits are high ;-)
Can't wait. I am really looking forward to joining a group of freestyle yoga(ers). I've never been to Yoga for the same reasons I haven't been to BINGO!! It's a shame, Both have potentuaky good results. Its just....... creeking _ farting _ floor boards _ bingo wings ..... springs to mind! However this Freestyle Yoga sounds like its got a bit of funk. http://www.lifestylesforliving.co.uk/Pages/FreestyleFitnessYoga.aspx No wales, tropical earthy music involved. No chanting or humming either , I'm really ejoying getting fit, I never thought I'd hear myself say it! Its just finding what suits me and my lifestyle best and finding the right people who have the specialist knowledge on how to adapt this to benefit you mentaly , and physically.

Any Efforts?

2012-06-23T15:00:00.000+01:00

Its Saturday.
Last night at Midnight I joined around 600 hundred people in Norwich for the 7th Starlight walk in aid of Macmillan Cancer Support of 13 Miles. We walked around the Norwich Ring Road in the dark until the early morning light!
This being my longest walk ever. I didn't know if I would be able to stride 2 miles.
We walked, We talked Blister ........ and ........ 4.15 hours later I finally reach the end...!!!!..

Do I feel good? Not really!
Was it worth it? Yes!
Did I raise much? Not really!
Will it make a difference? Yes!
Would I do it again? Yes!

http://www.starlightwalknorwich.co.uk/index.php

The morel of my walk.........

' Any Effort Helps '

Macmillan Cancer Support registered charity number 261017

Charity Giving - Kerry Ogston's Fundraising Page

2012-06-16T22:28:00.001+01:00

Charity Giving - Kerry Ogston's Fundraising Page

Fundraising Page

2012-06-16T22:07:00.001+01:00

Charity Giving - Kerry Ogston's Fundraising Page

Accidents

2012-06-14T22:46:00.000+01:00

Accidents to Children

Accidental injuries are a major health problem throughout the United Kingdom. They are the most common cause of death in children over one year of age. Every year they leave many thousands permanently disabled or disfigured.

More than one million children under the age of 15 experience accidents in and around the home every year, for which they are taken to accident and emergency units. Many more are treated by GPs and by parents and carers.

Those most at risk from a home accident are the 0-4 years age group. Falls account for the majority of non-fatal accidents. Most of these accidents are preventable through increased awareness, improvements in the home environment and greater product safety.

(ROSPA) C:\Users\kerry\Documents\Accidents to Children Child Safety Advice & Information Home Safety RoSPA.htm

3 Peaks !!!

2012-06-13T12:37:00.000+01:00

Ive been so concern about training for this 3peaks challenge. I really do no exercise and only eat muesli and chocolate, i drink way to much coffee too.

Thank you to Lorna from Life style for living lifestylesforliving.co.uk, Body Rush gym in Norwich - I now have a personal trainer. Lorna understands that I need serious help with my fitness and has offered to help me, she read my blog and offered to help. I was touched at the consultation that this has been offered for free.
I can actually see me getting fit!! I cannot wish for better, apparently my happy levels will rise ..

watch this space. xx

3 Peaks Challenge

2012-06-05T23:28:00.000+01:00

OK, LETS DO IT ANYWAY a local charity have team up with us to help raise the rest of the funds for a safe room. http://www.letsdoitanyway.com/projects.html (Please see project 4)

After the 999 night supported by TOE TO TOE boxing club and premier sports event raised so much for The 'Daisy Chain fund'. We hoped to raise £4000 to provide Daisy with a boxed in bed that would contain Daisy safely, be padded and stop any roaming around at night, and also let her sleep and wriggle around knowing she couldn't damage her head that still has, and will always have, a large piece of Skull missing.

As the funding efforts went so well on the 999 night (Police Vs Firecrew in the ring) and the local support from everyone who attended not to mention the donations made , We raised around £7000. Thank you to everyone who attended and the great support.
Due to the success of the 999 Night, we can now go that little step further ...... and forget the bed ..... With more of a boost for funds Daisy can have a well deserved room, fully adapted to suit her disability, defect of additional need (however you like to word it?!?)

With this room Daisy could sleep, play, grow, read, dress and self develop in at least 1 room of the home. The family can relax knowing that she is safe and furnishing within her room not be restricting for her (as a boxed in bed would), or make her feel like a dog in a cage she will feel like any other child, with subtle adaptations to furniture and fittings , she wont even know its her safe room.... I cant wait!

So join me know and sign up with facebook page letsdoitawyway and lets peak to the target amount and sort this once and for all.

Please note- I am a very unfit 32 year old, I walk to my car and that's about all the exercise I've done in the last 10 years... therefore there are NO excuses if I can do it anyone can!!!!!

Read on for the 3 Peak challenge

Join Charity Lets Do It Anyway for One of the most famous & rewarding mountain challenges in the UK & raise funds for Daisy.....

In September 2012 Lets Do It Anyway will be taking a group of supporters to complete the highest British three peaks, to raise funds ...for 3 year old, 'Daisy Ogston's 'Daisy Chain Fund' which will contribute to buying urgently needed Safe Space. Please checkout http://dottydaisy.blogspot.com/?spref=tw

Daisy is a beautiful three year old girl, who has a rare genetic disorder, Adams-Oliver Syndrome(AOS). Her symptoms include having Skull and skin missing, abnormal feet/hands and and Heart defect. Her parents aim is to keep her alive, healthy and happy, which means they desperately need to raise funds for a safe play area and bedroom. They have been doing great with fund raising, however, they would like a help-in -hand, so 'Lets Do It Anyway' is offering to help raise the final £5000 required!

The challenge:
To climb & summit the three highest mountains in the UK, which are Ben Nevis (in Scotland), Scafell Pike (in England) & Snowdon (in Wales). That’s 10,000 feet of climbing, which is... approximately 25 miles. A great charity group challenge & a fantastic achievement, never to be forgotten!

MORE INFO HERE -https://www.facebook.com/#!/events/329562167069819/

If I can do it anyone can!!!....https://www.facebook.com/#!/events/329562167069819/