teddington trust

Staying out of the shade…


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When Little Ted met Buttony Bear

Our journeys began like many others do, when something that is completely off your radar touches your life and changes the course of it forever.

We are just four Mums in an army of Mums, Dads, Aunties, Uncles and Grandparents all over the country who are passionate about making ‘rare’ lives better.

Between us we run Teddington Trust and A Bear Named Buttony.

They may be two very different charities supporting very different conditions but we are taking the same approach to educating and protecting children living with complex conditions.

Meet Little Ted and Buttony Bear; these hardworking little bears are passionate about being a good friend to children who are just like them.

 

 

Little Ted – Teddington Trust Co-Founder Nicola Miller developed Little Ted and his adventure story books as a reaction to a lack of age appropriate material to help Nicola’s young son learn about his life limiting condition Xeroderma Pigmentosum (XP). Now, an army of UV reactive Little Teds not only travel the world to help young children learn in a positive way how they can live a full life with XP, but also goes to school as part of a primary school education resource; teaching key topics such as diversity, inclusion, rare disease and sun safety for all. Last year this special Ted and his accompanying stories won a prestigious BMA Patient Information Award – Information for Children 2015.

Buttony Bear – Jenny Gow and Lynn Park, with the support of a team of friends decided to do something positive to help children who need to have ostomy surgery. They developed Buttony Bear after a friend gave a bear to a child they knew who had a gastrostomy many years ago. The bear had a button in its abdomen in the same position as the child’s gastrostomy. This simple idea gave her a ‘friend like me’ and is much loved years on from that operation. Buttony Bears now travels the globe having a huge positive effect on the new children they go to live with.

Both charities send out these valuable educational resources to children across the world free of charge offering a valuable friend to both child and parent, and a wonderful way for children to engage with their peers about their condition.

If you would like more information or would like to make a donation to allow us to continue reaching children with our super hero Teds please make contact through the links below.

For Little Ted and the work of Teddington Trust visit: www.teddingtontrust.com/#BearsforRare or our Teddington Trust or Little Ted-XP Facebook and twitter pages.

Email: support@teddingtontrust.com

Donate at: https://campaign.justgiving.com/charity/teddington-trust/bearsforrare

 

For Buttony Bear visit: A Bear Named Buttony Facebook page.

Email: Jenny at buttony@breakawayfoundation.org.uk

Donate at: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=ButtonyBears&faId=598304&isTeam=false

They look forward to hearing from you. x

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From then till now… (Guest blog by Cathy)

Foreword by Nicola Miller, Teddington Trust

One of our key objectives is to educate and inspire others affected by XP, to realise, at that key time of diagnosis that much is still possible. And one inherent trait that all XP families, we have been in contact with share, is an unbelievable spirit to get up, get on and make life great, and sometimes to the outside world they make it look too easy.

But; make no mistake a diagnosis of XP is a devastating one that affects every aspect of the patients life and requires a considerable commitment to the unconventional.  What we cannot and must not do is avoid or undermine the seriousness and often cruel reality of this condition, and we must accurately portray and represent what it means in different ways to different members of our XP community.  You have heard us mention the possibility of neurological involvement for XP patients, but what does this really mean?

Please take some time to read the story of a beautiful and incredible young man called James, as written in words and pictures by his Mum Cathy.

………………………………………………………………………………………………………………

From then till now… by Cathy


“James first burnt at 14 days old on a sunny April day.

He was diagnosed with Xeroderma Pigmentosum at 7 months old and we tried as a family to come to terms with what the future might hold for us all.

What we didn’t know until James was 3 years old and showing that he had speech and language delay, and was unsteady on his feet was that he carried the XP gene that would lead to him deteriorating neurologically.

James 3

This was like going back to square one, almost feeling like it was an additional diagnosis rather than part of XP, after all we had focused on him not burning not getting cancer so it was all to do with skin.

Suddenly people were talking about him losing hearing, mobility, cognitive function, without being able to support him if it would happen, how affected he would be or over what period of time.

No one could even tell us why it happens to some people and not others. All they could say was it wasn’t related to sun exposure, so no matter what we did if it was going to happen it would, and it did.

James had normal hearing in the March just before his 7th birthday, by the September of that year he had bilateral hearing aids. He rode a two wheel bike in the April for his birthday, and by June he had to give it up for a disabled tricycle which he loved–bless him.

Since then some function he has lost slowly and others very abruptly.

The worse has been since October 2013 when his vocal chords suddenly became paralysed. He was at his day care centre on the Wednesday and in a blue light ambulance on the Friday. He had a tracheotomy inserted and made a quick recovery and was in Cyprus on holiday 12 days post op.

No longer able to talk, the silence was difficult for us to adjust to but James took it in his stride. We adjusted to little sleep, video monitoring him at night and carrying around suction machines, trachy tubes, and holding our breathe that nothing would happen if we went out. The management of his skin well established by now we almost forgot about, performing tasks robotically, all energy on keeping him safe not from UV but from choking, or the tube blocking.

James had been having swallowing difficulties, puréed food and thickened drinks, for the past year, one Christmas eating a normal dinner, the next a puréed dinner, and by the next Christmas he was tube fed. This was probably the worse period. James suddenly become unable to swallow in February 2014, and one day yoghurt came out of the trachy, the following day he was coughing, and the next in hospital in resus –he had pneumonia.

This lead to him being tube fed, and later having a gastrostomy to feed him to keep him alive as he could no longer eat. He was allowed to drink water, but this has recently had to stop as he was coughing and producing a lot of mucus from the trachy. It was during this admission that James changed the most.

He was in hospital for 8 weeks seriously ill for some of it and recovering for part. However the feed gave him diarrhoea, and he had to wear nappies– he had gone in wearing boxer shorts! Medication was given with little effect and the feed was changed numerous times until he tolerated one with the need still to have medication four times a day. He was discharged a completely different person his personality gone, no laughter no sparkly eyes, my boy gone just a shell of his former self.

Unable to talk I have no idea what he makes of it all — to go from running around, riding a bike, being able to horse ride and swim to now not being able to even stand, unable to tell anyone anything, unable to eat, wearing nappies, cough and choke on your own salvia; just soul destroying.

Yet some days he tries to smile, he still flirts, and at the specialist Sense centre he attends he follows wheelchair yoga, participates in art, cooking etc. Other days he is unable to hold his head up, stay awake or control the drooling .

What makes one day so different from the other we have no idea, what the future holds no idea, how long will he live no idea, how much is he loved–loads x”

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The temperature is rising – are you sun aware?

By Rebecca Stewart

Sun hat

This weekend has triggered a personal conflict in me. The temperature is finally rising and, when here in the North East of Scotland we had enough snow to build a snow man last week, I am glad to finally step out of the door without a woolly hat on!

However it is also a sad time as I know what it means for our XP families. Being un-comfortable in essential layers to keep them safe, confinement to indoors when the temperature is too warm to stand all the protective clothing and visor, not being able to open windows to cool down the home, hoping the air con in the car doesn’t fail, turning down invites to BBQ’s and summer trips and desperately trying to keep cool and stop from overheating on essential outings are but a few of the difficulties faced by our XP families at this time of year.

My own XP journey has led me to a much better understanding of all things UV and it is something I have become quite passionate about. I know we have just had six months of miserable cold weather and the first sign of that yellow orb in the sky has got me banging on about sun protection but the sad fact is that over the next few days, as everyone heads outdoors to appreciate the warmth, my news feed will be full of images of people showing their burnt and blistered skin.

So here are a few sun/skin facts you may not already know.

  • Rates of malignant melanoma are rising faster than any other cancer resulting in 100,000 new cases each year.
  • Seven people a day die of skin cancer in the U.K alone.
  • At least two 15-34 year olds are diagnosed with malignant melanoma in the U.K every day.
  • On average someone who dies from skin cancer loses twenty years of their life.
  • Just one blistered sunburn in childhood doubles your chances of skin cancer in later life.

We all know how to protect ourselves so slip on a shirt, slap on the sun cream, stay out of the sun during the hottest parts of the day and stick on a hat and shades.

I’m off to finally hang the washing outside so in the meantime here is to a safe sunny week ahead for everyone.

For more information on the works of Teddington Trust and their educational project which promotes better sun safety for all please visit www.teddingtontrust.com/bearsforrare

Ted_sun

Image from Little Ted          (Illustrated by Michael Howdon, Copyright Nicola Miller)

*Facts courtesy of the British skin foundation


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Little Ted goes to…Brookham School

In January this year our Teddington Trust team were very privileged to be able to visit with the children and staff of Brookham Pre-Prep and Nursery School in Surrey for a fun filled Little Ted Day.

Having chosen us as their Charity of The Year for 2015/16 academic year, Brookham were among the first schools to invest in our Little Ted goes to school…educational resource pack and join our #BearsforRare campaign.

We started the day with our Little Ted assembly where we introduced the children to the work of Teddington Trust, the really tricky to say, condition of Xeroderma Pigmentosum and of course our own Little Ted.

In addition to having the chance to meet the children, who were nursery and primary age it was a wonderful opportunity for us to work with the children using their new Little Ted goes to school… pack.

After assembly our team split up to spend time with the Year 1 intake, who were tasked with coming up with some wonderful designs for a new protective hat for Little Ted. Children had to consider some of the difficulties they had heard about in the assembly such as vision, ventilation, and hearing issues all while maintaining UV protection and of course with consideration to colour and style!

Next Year R took part in the `Little Ted Challenge`. Children joined in on a number of activities wearing the same essential protective equipment that children with XP have to wear. This included some basic tasks like tying their shoe lace, having a drink and picking up objects, then onto playing ball and exercising. The children then reported how it felt doing the tasks and gave some very insightful comments about what it might be like to have XP.

Year 3 tackled poetry and adventure story writing with great enthusiasm. Half worked on a sunscreen poem, that was to be adapted by Brookham as their very own official sun safe motto. The other half used their wonderful Little Ted story cards to create their own adventure stories. Pupils had to consider character traits, establishing a problem, solving the problem and a suitable ending. Our team were all very impressed by the fantastic work that both groups produced. Definitely some budding poets and authors of the future in Brookham Year 3!

A quick break for lunch and it was time for Year 2 and character design. Illustrator, Michael Howdon part of the Teddington Trust team for the day helped children consider different types of character profiles and how to portray these in their drawings. The children then had to think about and design their own character considering it’s unique traits and whether a force for good or evil and depict these in drawn form, using what they had learnt from Michael.  There was a wonderful mix of characters, drawings styles and some amazing and imaginative superpowers!

We ended the afternoon with a little visit to say hello to the nursery children and had a lovely time reading them our Little Ted story and introducing them all to Little Ted where he received lots of nice cuddles.

Across each of the exercises we were super impressed with the quality of work and wanted to take time to review and acknowledge some of the stand out pieces of work from the day.

We hope you will enjoy the following samples of work from the children.

Literacy – Little Ted Story:

George for his space and football adventure which showed a really considered understanding of Little Teds needs, while still being fun and full of adventure with a surprise plot twist at the end!

In recognition of his great work, we mocked this up into a little book cover and story for George to enjoy.

Brookham_Adventure on planet Cristo

Brookham Adventure on planet Cristo

 

Arthur,  for his sailing adventure in which Little Ted has to think about advice from his doctor to make sure he stays safe while enjoying his fun day out with Baby Roo and his friends.

Brookham_Authur

Literacy – Little Ted/Sun Safe Poem:

Poppy, for a wonderful poem that really captures the important messages of keeping safe in the sun at school and out and about.

Brookham Sun Care Poem

Brookham Sun Care Poem

Creative Arts – Character Design:

The following children where all identified as having created a unique character whilst incorporating the brief from Illustrator Michael Howdon and represent a mix of good and evil characters:

Hugo, for his space robot Zero, with magic powers and wings as a force for good,

Monty, for his evil winged character with robot evil bee accomplices,

Poppy, for her high jumping rabbit with magic carrot,

Stewart, for his evil Venom Bonus with dynamite and fangs, and

Daisy for her SuperMouse with cape, lasso tail and magic keys.

Technology – UV Protective Hat Design

Finn: For his consideration of the key comfort issues which are addresses in his design;

Amelie: For her creative design and consideration of user comfort

 

Our team enjoyed an absolutely wonderful day with the with the children of Brookham School, and we would like to thank all  staff and children  for taking part so enthusiastically in our Little Ted goes to school… day.