teddington trust

Staying out of the shade…

The Teddington Trust – Till Now and Beyond

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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 



One thought on “The Teddington Trust – Till Now and Beyond

  1. It has been a total pleasure to be lucky to be involved with ‘Operation Ready for Teddy’. The inspiration all of us involved gained from two unique individuals, Teddy and Roo is indescribable and has shown us all that ‘nothing is a problem’ ‘it is just a challenge that has not been solved’.

    Project Manager

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