teddington trust

Staying out of the shade…

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Operation `Ready for Teddy` Blog 7 – The End was Firmly in Sight

Since our last blog so much has changed: we have moved from Summer to Autumn and the end of British Summer time, which meant the start of early dark nights and now winter. All of which has brought about huge change for me and a new lease of life with lots more outside time, and of course the all important time outside after dark without the restrictions of my protective clothing.


And along side all of that the relentless work on site has pushed on with everyone driving to get my new Indoor Garden finished.

After a hiccup with an injured Plasterer, we soon found a replacement who came in the form of a family connection; Michael. Michael, it turns out is a bionic plasterer who definitely gets my joint award for the most hard working tradesman on site alongside Digger Man Paul, (which is a very tightly contended honour, as the dedication from all of our team has been incredible). And for some their only reward has been tea, the odd custard cream and my ever smiling face at the window!

 With long days, well into the night, and no breaks Michael soon turned the shell of grey blockwork walls into a more finished looking room.


Now, at this point, Mummy and Daddy decided that I had seen enough and that the new “No Peeking” rule would be put in place. As Mummy and Daddy wanted the rest of the works to be a surprise  I am going to have to hand over now to Mummy for the rest of the project update…so for the time being, its Ted signing out!..


…Ok, so as Eddison said we now had a plastered shell which meant it was time for a frantic flurry of activity to turn this space into what was to become a garden!

Over the next few weeks the large double glazed units were delivered from Pilkington Glass directly to Mirage Tint so that the UV filtering film could be fitted. These were then safely hand delivered by Ben at Mirage and after a nervous night under a blanket in our garden, were installed by Vince bringing us to the landmark position of being watertight!

Meanwhile the electrics were underway by Neil and Trevor, the weatherboarding went up finishing off the external envelope and external painting got underway.

Eddison`s Auntie Cara and Auntie Becky arrived for a flying visit to paint and second fix the weatherboarding, and gave us a huge amount of help starting to clear the site. In fact after about 4 hours of graft and 5 tip runs in the driving rain (including one by Lesley, who only popped round for a tea!) we were all ready for the rubble to be picked up. Even a minor incident of a broken toe didn’t deter us as we edged closer to the end.



Next Auntie Hannah arrived and lent me a hand with some special projects for the fit-out and the guys from Outdoorsy Living arrived armed with a van of wood. Within two days our vision for the space was a reality and our Pirate Ship was taking shape, finished off beautifully by the play equipment from Just Outdoor Toys, complete with portal, ships wheel, periscope, climbing wall, spiral slide.


Now time for painting. After MANY late nights into the small hours by us with much needed painting and banter reinforcement from Emma (Eddison`s friend Finlay`s Mum) and a surprise visit from Uncle Thomas and Auntie Emma the painting was nearly there. Kate appeared again to add some very special touches and braved the 3 meter scaffold tower to paint a sky on the pitched ceiling, complete with clouds and Eddison`s own sun. She also spent many a night creating 6 incredible boards to complete the sky, with fun images of birds, planes, rockets and more.

Carl from Medash Sign Writing came to site to supply and install an extract of a poem that means a lots to us; The Little Land by Rober Louis Stevenson – just seems to apt.


Dean Hatcher, who provided our site scaffolding and has assisted greatly throughout with contacts, arrived on site to add a very special further finishing touch. We provided him with a massive white washed 1.5m x 3m board and after a few hours in there on his own with headphones on, he emerged with a finished piece. A most incredible one off mural created with spray paint depicting Eddison and Raife with clever reference to their nicknames (Ted and Roo). What a wonderful, special piece that we will appreciate for many years to come by a very talented artist!


Digger Man Paul and Robin came back and along with Eddisons Daddy spent many days in the torrential rain reinstating the outside garden and creating a wonderful surface for Eddison`s Night Garden which means he can enjoy the garden after dark all throughout the autumn and winter.

 Then with another day of all hands to the deck with Eddison`s Daddy (Andrew), Uncle Thomas, Paul and Robin the inside grass was also laid.


Suddenly, the imaginable was here; after the final push Andrew and I shifting 25 x 25 kilo bags of sandpit sand and doing a deep clean, adding a few essentials like watering can, rake, spades etc; we stopped looked back and there it was…

The most incredible safe space every bit as we dreamed and so much more!!!

All there was to do was get a few hours sleep and look forward with great excitement to revealing it all to Eddison the next morning!




After a final whirlwind of work on site in the final weeks we owe huge thanks to the following:


Michael Rayson (Plasterer)

Martin – Dove Construction (Weather Boarding)

Vince (Glazier)

Mirage Tint (UV window film)

Neil Shorter (Electrics, site clearance and more!)

“Syd” – (For slide base works)

Pilkington Glass (All glazed units)

Adrian – AP Bourne Carpentry

Dean Hatcher (Mural Artwork)

Nigel, Ben & Crew – Outdoorsy Living (Insitu play structure)

Jane @ Just Outdoor Toys (Play equipment)

Paul Ingleton & Robin (Installing outdoor and indoor grass)

Mal Lyons – SynthiGreen UK Ltd (Indoor Grass)

Jonny – DIrect Artificial Grass (Night Garden – Grass)

Emma Bishop (Painting)

Kate Stevens (Artwork)

Uncle Thomas, Auntie Hannah, Auntie Cara, Auntie Becky (Many, many jobs and keeping us sane in the final weeks!)

Brad – Shadoxhurst Scout Master (Site reinstatement);

Travis Perkins – Materials


Super special thanks to Auntie Becca our Treasurer for keeping track of all funds coming in and going out and keeping us trucking, and of course to Project Manager Trevor, who turned electrician and builder to help with the final jobs!


 Mummy and Daddy`s Final Thoughts

 “very, very tired but very, very happy.

Words cannot express…”

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The Teddington Trust – Till Now and Beyond

The last 12 months have made 2013 a remarkable, special year for all involved in the Teddington Trust.

Incredibly after only 18 months of fundraising, endless enthusiasm from our Team Ted and with thanks to a very special group of people who gave so generously of their time and resources we achieved our dream!

So we end this year with Eddison`s stunning Safe Indoor Garden complete, and with many, many hours of safe fun under his belt, something which seemed like a far away possibility at the start of the year.

During this process we have been overwhelmed almost daily by the support we have had from those around us and by new friends who have extended their hands of friendship to help in so many ways.

This year to name a few, our followers and supporters have;

 –          Donated money, time and prizes; and held

–          Coffee mornings

–          Pub raffles

–          Work sweepstakes

–          Stalls and raffles;

–          Fashion shows; and

–          Quiz nights


The combined efforts of 18 months of varied fundraising brought us to a fantastic fund, which while short of the target total build and fit out cost, enabled us to proceed with confidence on works, with the view of aiming for a water tight shell this year.

After the involvement of our secret weapon Project Manager a small crack team of local suppliers and tradesmen were soon assembled and `Operation Ready for Teddy` got underway in July. What followed was nothing short of the fantastic and has left us and all involved utterly inspired. The team of participates grew weekly, many giving their time for free or significantly reduced rates. Suppliers rallied meeting out tight timescales and more than tight budget and after only 4 months on site we opened the doors to Eddison on 12th November to a fully completed and fit out garden complete with play equipment, grass and bunny rabbit!!

The change this has made to Eddison and to us as a family is clear to all, but beyond that we have gain so much more than this special space…

We have built many strong friendships along the way in our local community and with those who has been more remotely involved but equally supportive to us. This process has also enabled us to make connections with other families affected by XP around the world, and these binding friendships will be invaluable to us and Eddison as he develops and deals with his own condition.

Throughout the entire process Eddison has always been at the centre and the experiences he and brother Raife  have had have unrepeatable. We watched with joy and pride as he engaged with the various tradesmen on site, with an ever present smile on his face, and he reveled in being involved with site works (not many 2 year old boys that can say they helped dig foundations, level concrete and build walls!).

Eddison has continued to tolerate his regime and protective measures whilst maintaining his adventurous spirit and has blown us all away with his ability to do things we never imagined possible. We have seen him have his first outdoor picnic, paddle in the sea, run on the beach and wade through mud in the forest all in his protective clothing and we are always amazed at how he finds new ways to adapt to each scenario, and how he keeps us on our toes having to keep up with him with appropriate clothing and visor to suit his adventures. Apparently when he is 3 he is going to “ride a horse”, next challenge for Mummy!

So as we come to the end of this year, we move forward feeling very blessed for the events of the last 12 months and we are acutely aware of how lucky we are that so many people understood our vision and believed in us.  

Looking forward we and the Trust will continue to work on ensuring that we can support Eddison with his specialist needs and ensuring that he has access to opportunities outside of the home, but in return for the kindness shown to us we also look to turn our focus to the wider XP Community.

 We have a number of very special initiatives that we will be launching over the coming months which will include, a project partnership to develop an affordable UV safe shelter, supporting the newly formed South Africa XP Support Group with provision of UV protective clothing and a very special series of educational books for pre-school children. Stay tuned for details soon…

Please continue to support and follow us in order that we help make a difference to Eddison and others affected by this condition and can continue to raise awareness of Xeroderma Pigmentosum.

This year we will attend our first Owl Patrol Camp (held by the XP Support Group UK); Eddison will start pre-school nursery and we will continue our family adventures!

 We look forward to enjoying watching Eddison and his brother Raife grow and develop over the next 12 months ahead and sharing some of these moments with you and hope 2014 will be an exciting time for the Teddington Trust and our future projects.

Thank you for sharing our story and giving us so much love and encouragement.


We wish you all a happy and healthy New Year.

 With Much Love

 Andrew, Nicola, Eddison, Raife

And all at Teddington Trust x x