Please check out Hannahs' Facebook page HERE for the very latest!

NOVEMBER 2009 UPDATE
Wonderful Jacqui has been quite rightly giving me a severe push in the back to sit down and write an update on Hannah.  The site is still wonderful and lots of people visit but my apologies, totally down to me that since Jacqui took the time to make it even more super recently I have not updated the content.  Photos will follow shortly as Hannah has been very busy.
 
Feb 2008 was a bit of a downturn as Hannah had her second major seizure, no warning, silent and scary for us both.  She is a fighter though and although it has taken a while to get her back and there is some small signs of the seizure, overall she has bounced back and those magic light bulbs ping every so often even if it is really simple things like she can now wear finger gloves as can manipulate her fingers to be able to put them on properly and play doh has become fun because she can mould it a bit now and we often end up with pretty much the same shape but it can be anything from a rabbit to an apple pie!
 
Huge thanks to Starlight Charity via Sarah and Pamie who helped organise a trip to Euro Disney in March 08 with cousin Joe and thank goodness Caroline on hand too.    Hannah although not quite herself, was totally caught up in the magic of the Mouse and all things Disney Princess.
 
Summer came and went in a blur last year as I was far too busy at work which I regret but the sun shone and Mr and Mrs Captain Christmas let us squat again in Chobham.
 
Christmas, which frightenly is only round the corner was bliss and Hannah spoilt rotten not only with pressies but just the fact that everyone has time and she gets to see all the special people she loves.
 
School is super, well despite let's say the 'Management' which is laughable and such a total disappointment especially for her last year at the Centre, perhaps the trustees will see the light soon.  So many excellent staff left in July that it was like a new school for Hannah in September but Gabi and team and Jo G keep things on an even keel thank goodness.   Hannah continues to love it and do so so well.   I am back full headed with school KS3 transition with so few options having to fight to make her move next September 2010 the right one.   It makes me dizzy but again good advice and people round Hannah all so supportive, fingers crossed Hertfordshire LA will see the light and as things stand at the moment I am getting far better vibes than the two previous runs at Tribunal.  Maybe there is a big red sticker on Hannah's file saying - just say yes !!!!!     At the moment thing we are looking at Ingfield Manor a conductive school but in West Sussex, Trelor near Oxford which would put a programme in for Hannah and possibly PACE in Aylesbury.  The County are looking at an alternative Lonsdale which we stood against at last Tribunal but are talking a 'package' round her to make it work... watch this space.    Grey hairs ! but I take my lead from Hannah, school is such an important event for her with her excelling at curriculum but needing the theraphy to keep well enough to learning.  She needs a 1-2-1 support to facilitate everything she does and to read her eye pointing and limited but good signing and her wonderful Speech & Language therapist at The Centre will fight as hard as I to ensure Hannah get's what she needs in her next placement and Gabi will be right behind us on the physical side and curriculum including ICT which has become so important.  We should hear end of November whether we are fighting or working together.
 
End of last year friend Laura nominated Hannah through her work for The Mothercare Chairman's Fund and was granted one of the biggest awards £5k. Graham Storey at Kingsmead/Simply Stationery also raised £1.5k and therefore together enabled The Centre to purchase a Mytobi eye scan talking computer for Hannah which has enabled her to take another step forward, plus tell me she loves me and that she wanted a sandwich !!!
 
This Summer, again at wonderful Chobham, was a swirl of Legoland, swimming, Willow Farm, Cousins, Friends and Mum eating far to many sausages and maltesers.   On July 4th, I felt strong enough to organise Hannah's first birthday party in far far too long.  Thank you to Lorna aka Fairy Dizzy, Nana Pam, Alice and the Baker-Pearce's.  And always Caroline and the Jones Gang.
 
Christmas cards are whizzing through probably to raise money for new Walker boots and hopefully to cover Horse riding perhaps.  Can't wait for Christmas and do look out for the updates on the website especially photos soon you will not believe how Hannah has grown. Things to look forward to - Bridesmaid Hannah June 12th for Jon Bradburn and Caroline Jones - can't wait and that's just me !!!

Julia xxx 

hbrabit.jpg image by ebrennelves hbnurse.jpg image by ebrennelves

DECEMBER 2008
Many, many thanks to all who purchased Hannah's Christmas Cards and huge thanks to Kingsmead Cards.

JULY 2004 - MY 40TH BIRTHDAY PRESENT HAS ARRIVED!
We spent a glorious weekend with Julia and Hannah, who are house-sitting for the wonderful Graham & Helen Storey in Surrey. (Graham does the fundraising Christmas cards for Hannah - check out the Kingsmead link and get yours in early!).

Hannah had been in possession of her walker for about a week, and already she's a marvel to behold in it. Julia has come to grips with getting her into it (a feat involving a pillow, lots of straps, patience and an alan key) although she did have a very poorly finger when we were there due to trapping it in the equipment (hope it's made a full recovery, Julia!).

Hannah's delight in being upright and viewing the world from this different angle is tangible. Although the main aim is for her to walk, she seems to revel in standing still & simply taking in her surrounding environment - touching bushes, giggling at the wind in her face, watching bubbles being blown - and trying to catch them, of course, like any little bouncy five year old girl.

I felt utterly overwhelmed to see her delighted little face - I wish everyone who contributed so kindly to our fundraising efforts last year had been there to share the moment. It goes without saying that I think Hannah is the bee's knees, but I must add that Julia is the most incredible mother - her total commitment and constant selfless concern for Hannah are justly rewarded by the love and adoration that shine from Hannah's face when she looks at her Mum (and, indeed, her tears when Mum fell out of the boat in the swimming pool!).

It was the best way to spend a weekend, and I just wanted to let everyone know that the money raised has had the much-desired result!

JULY 2004
Huge thanks to Mandy of Castle in the Clouds, who makes gorgeous fairytale made-to-measure wedding and bridesmaid dresses. Mandy has very generously offered to make a lovely dress for Hannah, and is donating another for a future fundraising event.

 hb2.jpg image by ebrennelves

 

JUNE 2004
A Message from Julia

After our second trip to Keighley to The David Hart Clinic we came home with an amazing couple of pieces of kit. We were very tired physically (that's me), mainly because Hannah is not great in the car so we were constantly stopping, but also emotionally; to see her up and walking was a very tearful experience.

My little monkey did not want to sleep coming home and was obviously on a high despite having spent nearly 2.5 hours in the walker during the 4 hour appointment, with lots of measuring and adjusting and nearly fainting ! But throughout she was wonderfully good which boded very well for her using it when we got home, and having to have me put it on. Although it was late on Thursday night I was elated although full of trepidation, as when you wait for something for so long - I was scared stiff of breaking it, hurting Hannah or just not being able to put her in it despite the training. Lost a wee bit of sleep as brain on over-drive that night, but was utterly delighted!

Friday morning, when Hannah came down to get ready for school - potties and Weetabix fun - I asked if she had liked her walker yesterday; she beamed and then I said 'look what's over there', and when she turned to see it in the corner she did one of those Christmas morning beams, as if she could not believe we had been allowed to bring it home as well as use it the day before.

Despite School, Farm and Dance class, she was determined to go in it when she came home and I was ecstatic to discover that a pillow under the head helped everything slot in and clip perfectly, and I was able to remember all the do's and don'ts. Purple Piedros (boots) with her claps can also be used with a Gait Corrector that David supplied separately which ensures no tip toes, no crossing/scissoring and full weight bearing which means she is far easier to walk, as you would a toddler supporting her shoulders - in fact my niece Alice (9) was able to walk Hannah competently for the first time without me worrying that Hannah was too heavy for her.

Other than one "whoops" where I could not get her out because I over compensated on lifting her off the frame and everything is very precise - I have got far faster and much more confident in moving her around and getting her in and out, but because she so wants to go in it she lies very still and happy while I faff around.

Hannah is over the moon - her absolute determination accompanied by huge giggles is meaning she is progressing very quickly with it despite it being extremely hard work; I have to watch out for signs of fainting due to the fact that her body needs to re-condition itself to being upright and weight bearing for longer lengths of time than they can achieve at school. She has rediscovered the flip top dustbin, the garden, walked towards the television to kiss dolphins and the Fimbles. I was on the phone and had put her keyboard toy on the table and next thing I knew she was playing it because she walked there herself; she was able to sing into a kiddies microphone for ages without anyone facilitating it. This would usually mean it's difficult for someone to hold onto her for long enough. I am effectively hands free so I can facilitate play far more easily and just need to re-adjust the house from Hannah on the floor to being at nearly 5 year old height.

All the things that will go with it too, better sleep, better major organ functions, bowel control, head control, independence particularly with using her hands etc, pelvic bone strength, integration (although the walker is the only piece of kit which is not for kids to crawl on and try) and of course 'walking' teaching her brain to do what we all do as second nature which can only help in future possibilities of walking by herself.

Wonderful, thank you (which seems a bit inadequate!)

Hols2008031.jpg image by ebrennelves fittingwalker.gif image by ebrennelves Christmas2002789.jpg image by ebrennelves


APRIL 2004
Hannah can collect her walker on 17th June - she'll be walking for summer!

FEBRUARY 2004
Huge thanks go to JLT Risk Solutions, whose Christmas card scheme raised £1,000 which was split between Hannah and The Hornsey Trust School for Children with Cerebral Palsy that she attends.

Now we're looking to a whole new year of fundraising opportunities and would welcome your input. Hannah's needs will only increase as she grows, so having got the ball rolling we really need to keep it in play. Please feel free to leave any thoughts, comments or ideas in Hannah's guestbook or contact me directly.

Later in the year we hope to have auctions of celebrity signed items too. Again, if you have any ideas for similar offerings, please let me know!

Also, if anyone is taking part in any marathons, half marathons, swimathons, cyling events or ANTHING for which you could get sponsorship - please consider doing it for Hannah. We would be delighted to provide sponsor forms and t-shirts and would give any support we could to help you on your way!

JANUARY 2004
The total raised to date since the start of the 40th Birthday Campaign is a staggering £3,442.69 - we really cannot thank each and every one of you enough. This will be used to fund the walker in its entirety, plus follow-up appointment fees, travel and accommodation costs incurred in the process.

NOVEMBER 2003
Hannah had a very successful assessment with David Hart in Keighley in November, and the most fabulous news is that he's vowed to have her on her feet by spring. So hopefully Hannah and Julia will be Yorkshire bound again very soon

SEPTEMBER 2003
We're delighted to announce that Julia has at last won the tribunal for funding to keep Hannah at the Hornsey Trust School. This is fabulous news, meaning that West Hertfordshire LEA will meet the cost of Hannah's ongoing education.

It also means that evey penny raised by YOU will now go towards the David Hart walker, pending assessment of Hannah's suitability for this amazing piece of equipment later on this year. WAHOO!

fairies-border.jpg picture by ebrennelves