teddington trust

Staying out of the shade…

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Open Letter – To Eddison’s School

Dear Senior Management, Governors and staff,

We are approaching the start of Eddison’s third week in his first term at your school as a new Year R pupil, and we wanted to write to express our most sincere and heartfelt thanks for welcoming him so completely into your school.

Of course this journey goes back many months, in fact years, back to December 2012 when we first spoke with Mrs Love, regarding the potential future for Eddison at yours, or in fact, any mainstream school, and since this very first meeting we have been continually overwhelmed by the guidance, support and generosity of time you have given us to enable Eddison to make the best possible start on his journey of education.

His first few weeks have been a pure joy for him, and probably more so for us as he has seamlessly integrated into the school day and he enjoys the new adventure, in full, alongside his peers; but the hard work and commitment that has gone on in the background to make this possible has not gone without notice and is appreciated beyond words.

  • Your endless meetings, letter writing and funding debates.
  • Your emergency planning, staff training, staff and parent awareness.
  • Your scheduling and managing of the adaptation work to make the school safe, (window film throughout, new lighting, air conditioning to hall).
  • Your extra planning for taster sessions to manage pupil response to him; and
  • Your care and consideration in choosing appropriate and trusted staff to safeguard him during the day and the extra time, given in the most gentle and caring way to allow him to build confidence in his new environment and have faith in the safety measures.

All of this to enable our son to access every reach and corner of your school building in complete safety and comfort, and in preparation for the day that he stepped through the gates with the 59 other nervous yet excited Year R Owls and Ducklings so that he could feel just like them!

As I stood and ironed Eddison’s uniform tonight in readiness for the week ahead, I lingered over the school emblem “In Faith Endeavour to Achieve”; I cannot think of a more apt moto for us as a family, nor a more appropriate moto for a wonderful, nurturing school who are working with us to “achieve” what once seemed impossible.

Sadly, I know from close experience that not all schools rise to this most unusual of challenge in quite such a way, and so we feel that as well as our thanks, this exceptional response from an exceptional school, lead by a wonderful Head and Assistant Headteacher, should not go without recognition, so I hope you won’t mind that we have made this letter open and shared.

We know, like any voyage through school life, there will be the fair share of bumps ahead but as you quite rightly say “In Faith Endeavour to Achieve”.

Thank you isn’t enough, but it is said with all our hearts,

Yours faithfully

Nicola & Andrew Miller

ted school ted school2

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‘D’ is for Vitamin D – Claim your Free DLUX Vit D Spray (UK Patients only)

Vitamin D is essential for all children and adults for good bone development and long term heath and as we all know the primary source of Vitamin D comes from exposure to the sun. This of course leaves patients with XP depleted of Vitamin D as their bodies are unable to obtain enough naturally due to little or no exposure to the sun.

In order to attain the correct level to maintain good health, a high level daily dosage is required, which can be achieved through a variety of oral supplements.

We are working with Better You with the view to some exciting collaborations later in the year. These guys have a passion to educate the nation on the importance of Vitamin D and are fronting a National Vitamin D Awareness Week in October to raise to the profile of this issue.


You can find a host of informative articles, blogs and information on their website along with a range of supplement products.


Following our dialogue with their team, and ahead of their big awareness campaign the team at Better You have very kindly donated 100 bottles of oral Vitamin D DLUX spray to Teddington Trust for us to distribute to our UK patients. They have provided a mix of 1000 and 3000 IU so we can accommodate both the children and adult patients. Each bottle contains around 3 months intake based on a single spray per day.

We will be in touch with patients (known to us) soon to arrange distribution, or please message us directly to obtain your free bottle.


Its worth noting they also provide a spot-blood testing service, which may be useful for partners, siblings, parents etc of XP patients who may not quality for routine testing but may also be at risk of low levels. As a parent of a 4 year old XP patient, I am going to be taking the test as an indicator, and will let you all know the outcome!


We would like to send our sincere thanks to the team at Better You for their support and we look forward to continuing to work with them in the future!