Educating Eddison Part 2: Little Ted Book Project

Since Eddison`s first XP multi-disciplinary clinic in 2012 we have looked for ways to help educate Eddison in understanding his condition, and we immediately looked for age appropriate reading that might help us find the words to explain this. Unfortunately we found nothing that really helped, and so I started writing his own Little Ted story to help us introduce the concepts to him.

Eddison loved this, and really engaged with it so before long I started thinking of further additions to this and a small series of four short !Little Ted` stories in total have now been written.

Following positive feedback from the UK XP Clinic at St Thomas`s Hospital, London we have set ourselves a goal to provide a copy free of charge to all children affected by XP, for parents to use as part of their own toolkit in educating young XP patients and their siblings. These can also be used for peer education in schools and nurseries.

We have engaged with a local printing house that specialise in short run book titles and a local Illustrator who is currently working on bringing our Little Ted stories to life.

Based on known diagnosed cases we believe that for a little over £2,000 we can produce and distribute free of charge to all affected children of pre-and junior school age within the UK and Europe, and for around just over £3,000  we can look to reach the wider XP community worldwide.

If you would like to help fund this initiative and help us get to our fist £2,000 target please see our following link to donate online http://www.teddingtontrust.com/support-us  (please quote LITTLE TED under `special instructions/message`). All proceeds donated quoting this reference will go toward this book project, to fund development, printing and distribution costs.

If you aren`t able to make a donation but would still like to help, you can contribute a recipe or craft entry for our fundraising Friends of Teddington `Sunny Day` Craft and Cook Book. See events for details to follow soon.

In order to help us reach the affected children and families we would be delighted to here from any families with pre 11-12 year old children and XP Support Groups, Clinics and Communities online who can assist us with ensuring we reach all in our distribution. To note your interest please get in touch and we will notify you as soon as books are available.

Dermatological Nursing Journal: Patient Voice

I was asked at the start of the year if I would write a little piece for the quarterly medical journal Dermatological Nursing,  for their feature Patient Voice; I was asked to give a parents perspective on what it is like to live with the condition of Xeroderma Pigmentosum, from diagnosis through to daily life.

This article is in this month edition  and I hope will raise awareness among  their nursing readers.

“Nicola Miller recounts the shock and confusion of discovering her three-month-old baby suffered severe,
sunburn-like reactions to daylight; the frightening and frustrating journey to diagnosis and the terrifying weeks
spent straight afterwards in near-darkness. She describes the UV-protected life her family has learned to adapt
to and the challenges of giving her young son as ‘normal’ and carefree a life as possible”

Click link to read the full article x

Patient Voice XP (2)

Bitter Sweet

After learning of Eddison`s diagnosis we found much information on the internet about the condition and prognosis but very little about the everyday practicalities of actually living with the condition and how to go about finding a new `normal` and the everyday adaptions required. So in September 2012 we started writing this blog for two main reasons; one in the hope that it might reach some other families going through the same things with whom we could share our experiences, and two that it would help raise awareness about a little known of condition allowing people access into the more difficult to deal with sides of the condition, but more importantly focusing on what is possible and the positives we can take from it.

A side result of it, has been that it has given us an opportunity to outlet some of our emotions which has been extremely beneficial to us as a family.

We have always kept these light and tried to write them from Eddison`s perspective, which I know many of your have enjoyed having a giggle at, however we have always been mindful that at an appropriate time our wonderful, bright little man would have his own things to say and we would revert this to him, change perspective, or stop altogether.

And so today, after a very bitter sweet moment we decided that whilst Eddison is not ready for his own blog (tee hee), he is growing into a very independent little boy and its time for Mummy and Daddy`s voice and perspective to take the fore about our family experiences until he can speak for himself.

So here we go….this is how is happened…

After what seems like months of rain, finally we have been able to start enjoying some dry days, however with spring edging winter out this also means the inevitable warmer weather. This afternoon I managed to head out to the garden with both boys for a little potter around, and before long Eddison had moved all his ride on cars outside, along with his train set and keyboard! We enjoyed a lovely time outside which included a recital from Eddison on his keyboard whilst sat on his stage (aka, the sumerhouse steps!)

Playing Trains

Out for a spin

After about 40 minutes Eddison came to me and said “Mummy I am hot, I want to go inside”. I asked if he was ok and told him we would all head in, and just to give me 5 minutes to round up the toys and baby Raife. He turned to me and said “it`s ok, Raife can stay outside, I will go in to my Inside Outside by myself” (what he calls his Indoor Garden) and with that he trotted inside, shut the door behind himself, took off his bits and jumped on his indoor swing.

To say I was speechless is an understatement, I thought my heart was going to burst out of my chest. I have been dreading the first time when the inevitable happened and we would have to work around the boys being separated by the weather (one in, one out), and I don`t think I will ever forget that moment this afternoon, when I stood watching Raife run up and down the slide, while Eddison`s swung away inside beaming out at us!

Inside Outside

At only 3 years old, to have that level of understanding of his own needs, but also incredibly to be so thoughtful of his brother I find it incredible and I couldn’t be more proud of my gorgeous, thoughtful, patient little boy; and also I could not be more proud of baby Raife, who after a few minutes decided that it`s more fun being together and walked up to the door blowing faces at Eddison through the glass before marching in himself to join his brother on the swing.

Today feels very much like the start of the next phase of dealing with XP as Eddison takes a big jump from baby/toddler to little boy.

The Little Land

We have been asked many times where the text extract within Eddison`s Indoor Garden originates so we thought it would be nice to share the full text.

It`s a beautiful little poem called The Little Land written by Robert Louis Stevenson, which we came across by chance shortly after Eddison`s diagnosis and which immediately struck a chord with us.  The essence of this poem really reflects the sentiment of Eddison`s Indoor Garden and our aspirations for it, his very own “pleasant Land of Play”. I hope you enjoy it as much as we do.

The Little Land
written by Robert Louis Stevenson

When at home alone I sit
And am very tired of it,
I have just to shut my eyes
To go sailing through the skies-
To go sailing far away
To the pleasant Land of Play;
To the fairy land afar
Where the little people are;
Where the clover-tops are trees,
And the rain-pools are the seas,
And the leaves like little ships
Sail about on tiny trips;
And above the daisy tree
Through the grasses,
High o`erhead the Bumble Bee
Hums and passes.