teddington trust

Staying out of the shade…


Leave a comment

Teddington Trust – The Story So Far…

Well…..I think it`s fair to say that 2012 has been a real journey for us all, with…..well…..quite a few ups and downs.

We started the year with great excitement knowing we were expecting our second baby and broke the news to our family while spending time with them all in Scotland to celebrate Eddison`s first birthday.

We returned home to Kent at the end of January very much looking forward to the year ahead.  Waiting for us in our pile of mail was an appointment at St Thomas’s hospital for a return visit to get results for Eddisons biopsy carried out at the end of the previous year. We were really looking forward to this appointment, as after all the unexplained burning episodes we were desperate for answers and felt sure that the next steps would be to carry out allergy testing….simple tests on his skin to assess what the trigger was and then `bobs your uncle` we eliminate the culprit and no more flare ups……OR NOT as the case may be!!

February 14th (not our best Valentines day to date!) life as we knew it changed!

We received the very unexpected news that our gorgeous, precious baby had XP, which we were told was ultra rare and incurable.  Armed with the stark facts, we drove home, put our tired boy to bed, phoned our family, locked the door, closed the curtains (for what turned out to be 6 weeks before we could safely re-open),  trawled the internet and cried for….ohh……about 3 days!

By day 4 we realised all the internet searching wasn’t helping, so vowed not to do that again, and only to use it to harness the positive and not the negative side of XP….which, my goodness…have we achieved (THANK YOU ALL FOR YOUR PART IN THAT)!

It wasn’t a huge leap for us to realise that we were going to have to remain positive and proactive to ensure we can make life as fantastic and unrestricted as practically possible for Eddison and after initial suggestions by my gorgeous sister Rebecca the Trust brainchild, and with huge family support the Teddington Trust was born.

Then thanks to the long hours by our ultra creative family and family friends who made our logo and web ideas come to life we very quickly had an online presence and so it began…

After our first family/Trust meeting Eddison`s Grandad put his hand up and said he would get things kick started with a daring and audacious challenge! 176 miles in 4 days across inhospitable North Scotland countryside, with narrow roads and much of it through blizzard conditions, which is challenge enough, without the fact that our intrepid cyclist at the age of 59 has a severe neurological disability and can only ride thanks to a specially built trike. This initial event in May was our first and raised well over £7000.

Since then, you have been with us all the way and you’ve come forward to donate your time, energy and support to help us.

Together we have;

Jo Jingled,
Held Tea Parties,
Baked,
Cooked,
Run,
Danced,
Raffled,
Sold Chocolates,
Collected Textiles,
Held School fun days,
Auctioned Pupils Art,
Trolley Dashed; and 

Most recently, a very special event, which, we were able to take part in with Eddison; the fantastic Teddington Night Hike.

During this time we celebrated the birth of our second gorgeous son, Raife and we found much support in your well wishes as we awaited his DNA results, which, with great relief found that he does not have XP.

We have been completely overwhelmed by the support we have had from our family, friends old and new who have taken the time to learn more about Eddison`s condition, us as a family and in helping us with ideas, suggestions, prayers and fund raising to help us with Eddisons specialist needs.

To date thanks to the myriad of events, donations by family, kindness of friends and donations from supporters we have had our home and car safeguarded with special UV blocking film, been able to purchase a UV meter, bespoke UV protective gloves, clothing and UV fabric

Currently our balance is approaching £18,000 which sees us about 2/3rds of the way there toward achieving our dream of creating an indoor garden for Eddison and we are optimistic that with more exciting events planned for the new year that this aspiration can become a reality next year; which is just INCREDIBLE!!!!

Alongside all of this has been Eddison who has gone from baby to a wonderful, active toddler and who has been our true inspiration. We have witnessed many firsts this year, in addition to the usual walking, talking, potty training etc which are wonderful enough, we have seen him wear his first UV visor and outfit while making those early tentative steps out (or should I say crawls out), watch his excitement at his first bike outing on the back of Dads bike with adapted helmet, see the joy on his face at his first after dark play without visor, see the wonderment of the first time he felt rain on his face and his joy at this first Night Party followed by the bitter sweet sadness when it all ended.   

His willingness to adapt to the restrictive provisions and yet still flourish literally amaze us every day. He has an inbuilt love of all things outside, from animals, flora and fauna and takes great pleasure in the time he is afforded outside both when protected and when able to enjoy the fresh air without restriction after dark.  He sits patiently everyday  while we apply lashings of sun cream, and when we layer him up with clothes and visor and he does not let it stop him at all as he sets about everything with a truly magical and infectious smile.

We are blessed to see the same qualities in Raife and we look forward with happy hearts to a year ahead and indeed a lifetime of joy from both boys as a family who just happen to have XP in it, but who make the best of every situation and live life fully.

Thanks to each and every one of you for helping to make this year more Ups than Downs!

All our love

Nicola, Andrew, Eddison & Raife x x x

DSCF1636

Advertisements