teddington trust

Staying out of the shade…


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SupercalifragilisticeXPialidocious!!!

In a word, Saturday night was truly…MAGICAL!!

In order to celebate the clocks going back and to help with the adjusment Mummy and Daddy arranged a wonderful special night time play date with my friends.

All week before Mummy went out to check the UV readings to work out when would be safe and the night before when she got the final reading we contacted all my friends to let them know what time to come. Uncle Thomas and Auntie Emma have been visiting me and baby Raife this week, so Uncle Thomas helped Daddy get the garden ready and safe for nightitme antics while Auntie Emma helped Mummy make yummy biscuits and cakes.

While we eagerly awaited a zero UV reading all my friends arrived and Mummy gave us all fun bags with glow sticks and fun LED flashing ducks and goggley glasses. As soon as we got the all clear we all rushed out into the garden which was dark and looked magical with hanging glow sticks, a slide, ball pool and barrel of leaves with fun fashing toys and lights hidden inside.

After much fun and excitement Mummy took us through the garden for a secret picnic, where there was a wonderful pumpkin man and lanterns so we could see our treats which we enjoyed with warm hot chocolate.

We all had so much fun and I didnt want the night to end (literally, Mummy had to prise my fingers off the door to get me back inside!!)

I am looking forward to many more fun nights in the garden and hope to share many more of theses with my friends who all helped make it such a special night!

P.s. Cant wait for night snow!!

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Guest Blog #1: Auntie Becca

By keeping this blog we want to express and demonstrate how XP affects not only the patient and immediate family but also the wider family unit. As such we intend to feature a number of Guest Blogs from various family members to give them an opportunity to say anything they want about life post XP! 

Our first Guest Blog is from one of Eddison`s Aunties, Auntie Becca who was one of the driving forces behind the conception of the Teddington Trust. This blog documents her recent visit…  

Friday: Today my youngest  (Iris) and I are off down to Kent to see my sister and her family and I can’t wait. I am going to meet her newest bundle Raife for the first time and with only 10 weeks between them this will be the first time she meets Iris. It has been 8 months since I last saw them all. Since Eddison`s diagnosis they have not been able to travel the 600 miles to see any other their family.  

It is wonderful to see her at the airport and she has brought Raife with her while Eddison stays at home with Dad. Nic is in her element this is the furthest she has been from the house in 8 months. She says it feels like a holiday just coming to the airport!! 

With  cuddles all round it’s off home to see Andrew and Ted (Eddison). I can’t wait to get some serious cuddles with Ted!   

It is sooooo nice to be with them all and Eddison is now a proper toddler doing what all toddlers do, getting into mischief.  

No rest a quick lunch and we are off to a sure start sensory room that is nearby. It’s one of only a few safe areas Ted can play without his protective gear on. He is so good getting ready. Getting sunscreen and a hat on my toddlers was difficult enough without gloves and a visor and then getting them to keep it on in the hot weather. But I doesn’t phase him and he waits till we are in the car (which has been filmed) before he takes off his visor.

 Just as we are pulling out a guy stops us to ask for directions. Ted has now taken off his stuff so we are in a dilemma do we drive off and look rude or open the window and put Ted at risk. Just another everyday occurrence  that catches you unawares. Makes us think she could do with a sign she can hold up to the window to explain. Makes us think what about if they were in an accident we really need something that would alert someone to his condition and what it means especially as hospital lights tend to be the worst type for burning him.  

We make it to the sensory room which is fab. I am taking some pictures of them all when I suddenly realise the flash has gone off on the camera. Oh no what have I done? As it turns out camera flash is safe but it just shows even when you are trying to be really diligent it is so easy to slip up.

 Saturday: This morning Nic, Andrew, Eddison and Raife are off swimming. The hydo therapy pool which is safe for Eddison to go to have offered them 12 1/2 hour slots when the pool is empty. This is great news as finding a safe pool is proving to be a challenge for them. While they are away Iris and I make the most of the mild Kent weather and go for a walk. Something we can’t do with Eddison as it is too warm at the moment for him to be out for a long time with his visor on.

 Sunday: Hooray – today we get up and it’s nice and cool! We are taking Ted to the park. He has a blast on the swings and slide and the other little kiddies don’t seem phased by all his gear. It`s a tense visit for us adults, worrying about making sure his visor stays in place and gloves don`t come off, or clothes ride up, but thankfully Eddison seems totally unaware of our anxiety and just enjoys his short visit out!

 All too soon our trip is over and although Nicola is coming up with the baby soon so that his 92 year old Great Grandmother can meet him I won’t see Eddison and Andrew now until Raifes’ christening in January when I come back down to them.

 The whole trips reminds me of how much effort goes in to keeping Eddison safe, how restricted on a daily basis not only Eddison but also Nicola and Raife are in their ability to get out and about and how much we all miss spending time together.

 50 sleeps to go!!!”


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When the Sun Goes Down…

A week till the clocks go back and already the nights are starting to draw in – Hurrah!!

This week Mummy and Daddy took me on a special trip with my Auntie Cara and Auntie Becky (who are visiting for a few days) for some after dark fun in the park. All afternoon Mummy and Daddy kept running outside to check the UV readings and when it got down to 20 we started to get ready. I had my suncream applied, put on my gloves, outside clothes and visor and we set off to the park, not wanting to waste a second of safe time outside. We all sat in the car and waited while Mummy stood outside with the UV meter.

The minute the meter got down to a zero reading Mummy gave us the all clear and we all jumped out of the car. Mummy and Daddy showed me the meter and explained that now that it was dark and at zero I was safe to take off my protection, so with great delight I whipped of my gloves and visor!! A huge smile came over me and I immediately bent to touch the ground. Then with great excitement we headed into the park, even baby Raife came along, although he slept through the whole evening. Babies eh!?

We all had glow sticks so we didn`t get lost in the park, and some fun illuminated ducks which we had great fun throwing around. I ran, chased, slid, climbed and swung! I think swinging was my favourite !!

Just before we set off home it started to rain! I was amazed and kept reaching out to catch the drops as this was the first time I have felt rain on my head and hands which I really enjoyed.

It was an absolutely magical evening and I am so glad I got to share it with my lovely Aunties who helped make it such a fantastic and fun evening.


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New Shoes…?

Now that the lovely Autumn weather is here, Mummy and Daddy decided it was time we went shoe shopping for some new winter boots and to have my feet properly measured. I was very excited to get my new shoes…only it turned out it wasn’t as much fun as we thought it would be!!

Mummy went in ahead to check the shoe shop for lighting levels and the good news was that the children’s section was right at the back of the shop and away from the windows, the bad news was that the lighting over the seating and measuring area was unsafe. This meant that Mummy had to ask the Assistant to move to a corner area where the levels where at the lowest so that I could safely take off my shoes to have my feet measured. The Assistant agreed….reluctantly!!!!

It was a bit tricky for Mummy and Daddy to keep me within the small safe area as I was very excited and wanted to go exploring around the shop, and I didn’t really understand why I needed to keep my hat and gloves on when I was inside, I assumed Mummy had forgotten so I kept trying to be helpful by trying to take my protective clothing off!!! After Daddy employed his best distraction techniques (I like to give him the credit for his efforts – thank you Daddy) I managed to get my feet measured, unfortunately after all that they didn’t have anything suitable in my size!!

Mummy says she thinks internet shopping may just be the way ahead!!