Posts in Category: Activities

Tea Party for Tay-Sachs Recipe #2 – Jaffa Cake Cupcakes

We love two things at The CATS Foundation – sweet and orange! So I wanted to share a recipe of some amazing cupcakes from the Hummingbird Bakery.

These have been tested at home and although we do not recommend them to beginners they are delicious and look incredible!

For the sponge: 

Jaffa Cake Cupcake

Jaffa Cake Cupcake

Jaffa Cake Cupcake Closeup

Jaffa Cake Cupcake Closeup

210g (7.oz) plain flour

250g (9oz) caster sugar

1 tbsp Baking powder

1/2 tsp Salt

210ml (7.oz) whole milk

2 large eggs

1 tsp vanilla extract

100g (3.oz) smooth orange marmalade

For the frosting:

450g (1lb) icing sugar, sifted

6Og (2oz) cocoa powder, sifted

150g (5.oz) unsalted butter, softened

60ml (2fl oz) whole milk

Mini Jaffa Cakes, to decorate


one or two 12-hole deep muffin tins


1. Preheat the oven to 170C (325F), Gas mark 3, and line the muffin tins with paper muffin cases to make the number you require.
2. First make the sponge. In a freestanding electric mixer with the paddle attachment or using a handheld electric whisk, mix the butter, flour, sugar, baking powder and salt together until they form a crumb-like consistency.
3. In a jug, mix together the milk, eggs and vanilla extract by hand.
4. With the mixer or whisk on a slow speed, gradually pour half the liquid into the flour and butter and mix thoroughly until combined. Turn up the speed and beat until the batter is smooth and thick with no lumps. Scrape down the sides of the bowl as you go along. Once any lumps are gone, turn the speed back down and gradually pour in the rest of the liquid, continuing to mix until smooth and combined.
5. Spoon the batter into the prepared paper cases, filling them two-thirds full. Using a 50ml (1.fl oz) ice-cream scoop can make this process easier and will result in even cupcakes.
6. Bake for 20-25 minutes or until the cupcakes are golden brown and the  sponge bounces back when lightly touched. Leave to cool slightly before removing from the tins and placing on a wire rack to cool completely before frosting.
7. Using a freestanding electric mixer with the paddle attachment or a handheld electric whisk, gradually mix the icing sugar, cocoa powder and butter together on a low speed until combined and there are no large lumps of butter.
Gradually add the milk while mixing on a slow speed. Once incorporated, increase the speed and beat until light and fluffy.
8. Once the cupcakes are cool, use a sharp knife to make a hollow in the centre of each cupcake, approximately 2cm (.in) in diameter and about 3cm ( deep. Retain the cut-out piece of sponge. Spoon about 1-2 teaspoons of orange marmalade into the hollow. Replace the cut-out piece of sponge, trimming to fit and pressing down gently to ensure that the top is level with the rest of the cake.
9. Spoon a generous amount of the frosting onto each cupcake, then gently smooth over with a palette knife, making a swirl at the top if you wish. Top each cupcake with a mini Jaffa Cake.

Tea Party for Tay-Sachs Recipe #1 – White Sangria

When we asked everyone to host a Tea Party for Tay-Sachs in August we did, by no means, want everyone to just drink hot tea. We understand that fun and refreshments are vital to a good party, no matter how big or small.

So, to kick start the suggestions for the Tea Party for Tay-Sachs here is a recipe for White Sangria as produced by a very dear friend of mine. He takes great pride in his White Sangra so we hope you enjoy it!

White Sangria

White Sangria


1 bottle of sparkling wine or Prosecco (depending on your personal preference, you can also make it with regular white wine but the fizz adds interest!)
Red fruits – strawberries, raspberries, red apples, peaches… add as much as you like keeping in mind that more is fruitier 
2 bottles of 7Up (double the qty of sparkling wine)
1/4 of vodka
1 cinnamon stick
Fresh Mint

The idea is to put all the sparkling wine in, add the chopped red fruits, add the 7up and the vodka and finish up with 1 cinnamon stick (or a couple if you like cinnamon) and fresh mint.

Put it in the fridge and add some ice cubes if you prefer your drink super cool!


P.S. – with special thanks do Diogo David for introducing me to White Sangria and sharing the recipe with me!

Tea Party for Tay-Sachs !

Tea for Tay-SachsWhat: Host a Tea Party – this is as BIG or as small event as you wish it to be…

When: Throughout the month of August 2013

Objective: Raise awareness of Tay-Sachs and funds to support The CATS Foundation

Where: Your garden or any table in your home that is big enough to accomodate your family and friends

How: Invite your loved ones around for afternoon tea (be as traditional or as OTT as you wish), ask for a small donation per guest for the lovely tea you are providing (suggested £5.00) and take a photo of your event at its best!

Theme: Tay-Sachs and The CATS Foundation! It’s all about raising awareness, so we will provide not only appropriate merchandise packs (more details on these coming soon) but will also be posting some ideas on hosting and party decoration!

What’s in it for you: fun, spending time with loved ones, raising awareness of an awful (and sneaky) disease and funds for a very good cause! Ah! And a prize (this is ‘suspense’ still)! So we will ask you to take a photo of your event and send to us or post on our FB page, the most voted photo wins!

So start looking into your diary and book a date! We will be asking for merchandise pack orders soon!

#25 Trafalgar Square – Our first London Walk

#25 Trafalgar Square

#25 Trafalgar Square

Saturday 1st of June was International Children’s Day and we made the most out of it with ours. We set out on the 9.45 train to Charring Cross and reached our destiny, Trafalgar Square, just after 10, not bad considering the two kids under 4 and all the kit we have to ensure we take!

As instructed by our card (you can click on it to zoom and read it) we took entrance at The National Portrait Gallery via the gift shop (as we do!) and bought ourselves some postcards of famous people that are meaningful to us (and a bear!) and we also found a super lovely book to read to the girls, one of Amelie’s favourite TV characters – Charlie and Lola.

We completely must go to London

Postcards in hand we set off to find the real portraits but I must say we failed miserably and have only found one…

We had a great time though and Amelie was looking around and enjoying the silence and just taking in the colours and we did some reading and got impressed all over again with some of the portraits. George Catlin’s American Indian Portraits exhibition is on at the moment until the 23rd of June and we strongly recommend those who are in London to go and have a look, it’s really striking and the writing up on each portrait is actually quite informative and interesting.

There is also a display of Jacob Epstein: Portrait Sculptor whose work is really amazing and worth going around to see. I particularly like the bust that Hitchcock commissioned because he felt guilty from making money out of a friend! Gotta love Hitch!

We took exit via the gift shop (because it’s the disabled access, ahem!) and purchased yet another book – National Portrait Gallery Kings & Queens - which I hope to get around to reading this year still…

Audrey Hepburn (by Cecil Beaton 1945), Arthur Wellesley 1st Duke of Wellington (by William Salter, 1839), Queen Elizabeth II (by Andy Warhol, 1985), Christopher Robin Milne's Pooh Bear (by Marcus Adams, 1928), The Rolling Stones (by Gered Mankowitz, 1965) and David Bowie (by Fergus Greer, 2001).

Audrey Hepburn (by Cecil Beaton 1945), Arthur Wellesley 1st Duke of Wellington (by William Salter, 1839), Queen Elizabeth II (by Andy Warhol, 1985), Christopher Robin Milne’s Pooh Bear (by Marcus Adams, 1928), The Rolling Stones (by Gered Mankowitz, 1965) and David Bowie (by Fergus Greer, 2001).

We skipped St Martin-in-the-Fields as we had been there before and it was really busy with turists by the time we finished at the National Portrait Gallery. The cafeteria is indeed worth the visit for lunch as the food is good and well priced and the church itself is quite spectacular. There is usually some sort of music being played as many concerts are hosted there and so often rehearsals are taking place during the day.

We took a detour from our card and went to Cafe Rouge in Leicester Square for lunch, which is a new one and not only looks great but it also has loads of space and they were very accommodating to the double buggy. We also went to Liberty (which is one of our favourite shops!) and bought some overpriced cards because they are beautiful!

Way back via Trafalgar square and it wasn’t Tay-Sachs or underage that stopped us from climbing on the lions or chase pigions but actually the several demonstrations that were taking place that day alongside street entertainers, so we crossed it and made our way home – both kids asleep by the time we got back on the train.

Patricia, Amelie and Grace at the entrance of the NPG  - photo by Daniel

Patricia, Amelie and Grace at the entrance of the NPG – photo by Daniel


Well worth it, full of culture (more than my brain can currently process hence the book purchase) and strongly recommended!

Can’t wait for this Saturday’s adventure which is still to be drawn and grandma is coming along so, stay tunned!


New Challenge – 50 London Walks

London City Walks with Kids - 50 Adventures on foot

London City Walks with Kids – 50 Adventures on foot

A few weeks ago we decided, quite spontaneously  (which is not particularly easy to achieve now days) to hop on the train to London Bridge and have a walk by the river and grab some lunch. On our way we went past the Design Museum and decided to go to the store (skipping the museum altogether…ahem…), we love a good shop and the Design Museum is packed with lovely cards, children’s books, inventions… it’s amazing for such a not-so-big space! It was there that we found ‘London City Walks with Kids’ and thought that this would be a good way to have ideas for our family days out, after all there’s so much to do in London!


Each card has a number (there are 50 of them!) and a small area to cover and tells you what you can do and find, usually involves one major landmark at least (sometimes more) and all of it suitable for kids, of course!

Our aim is to do one a week (yes that’s almost a year!) and do as much of it as possible, as some have steps which are not doable with Amelie on the pram. We are letting Grace pick a card out (which is not always easy either as her little fingers tend to always want more than one).

Here is the card picked for last week – we went on the adventure on Saturday but that’s an all other post!



Another mountain, another thought for Amelie

My good friend Danny How (who is doing the 13 marathons in 13 months challenge with me for The CATS Foundation) send me an email the other day titled “Another mountain, another thought for Amelie”. I opened it wondering what it could be about as his normal emails rarely have a title and are usually full of training stats.

What I saw was amazing – there were pictures of a someone at the top of two mountains with a sign saying Amelie.

Amelie is there in spirit

Amelie is there in spirit

After speaking to Danny it turns out that a friend of his, Jose, has a friend called Luis who was really moved by Amelie’s story and how she is coping with Tay-Sachs. As a keen climber he now carries a sign with Amelie’s name up each mountain and takes a picture of it at the peak! As you can see in the pictures they aren’t exactly small mountains either.

At the top

At the top

Patricia and I are really touched that someone who we don’t know is thinking about our daughter and doing something quite extreme in her name. Amelie may never be able to climb a mountain, but in spirit she is there with Luis every time he gets to the peak. Thank you for doing this and thinking of her!

Training for a treat!

Bench sitting

Bench sitting

The last few posts I have written have shown all the treats Amélie has been getting and they all seem to be linked to food! So, as a balance I thought I would let you in on how our mornings together usually go and how she actually earns her little luxuries!

Pre workout

Amélie normally gets up nice and early (just be 6am!) and has her breakfast at 7am followed by a nap at around 8:30am. She is sleeping a bit more these days but I think this is because she goes to bed later now and is doing so much more.

The next stage of her morning involves her exercises – just to show everyone that I’m not just feeding her sugar!

Exercise 1

As in the photo you can see I put a special belt around Amélie to build up her core muscles. The easiest way to describe this is it’s like a weight lifting belt – it forces her to sit up straighter and work her stomach muscles. I leave this on her for about 10 minutes while playing so she gets used to it then I move onto the next part of her workout…

Exercise 2

The next stage is for Amélie to do a sort of sit ups by pulling herself up holding my fingers. We do a few of these then I change to work on her obliques (side muscles of her stomach) – these are exercises we first did in the pool during hydrotherapy. The plan is to make her stronger so she can sit better while feeding, playing and in the pram. The newest exercises are the last two and most challenging ones…

Exercise 3

This tough exercises requires Amélie sitting on a special bench given to us by the physios – she is on it in the picture. When she sits on it the exercise is called bench sitting and is difficult for Amélie as she has to really work her core muscles hard to stay up right and still.

I let her sit on the bench on her own (making sure she doesn’t fall) and then start relaxing her legs so her feet can go flat on the floor. As Amélie has tight muscles her natural stance is to stretch her legs out straight in front of her but with a bit of work they are getting a bit loser meaning she can put her feet down. I do this for a few minutes then change to the last exercise…

Exercise 4

This one involves me holding her pelvis in a neutral position. According to the physio, Amélie (the clever girl she is) has adapted her position by sitting at a slant to the right with her hips then to the left with her ribs and shoulder – she has done this so she can sit up. This isn’t that good for her though as it puts pressure through parts of her body which normally wouldn’t have any. Over time, we are hoping to make her be able to sit up straight.

Post workout

After all these exercises, which normally take between 20 – 30 minutes we then have a cuddle, play and sing (usually “row row your boat”, “wiggly worm” and then “zoom zoom zoom we’re going to the moon”) which she loves. Then it’s time for a late morning nap as the exercises tiring – after that its time to head out for the days activities.

So, as you can see Amélie always earns her treats!

Eurodisney – Day 3, a very brave Amélie!

Amélie in her very fashionable Mickey Mouse rain cape

Amélie never ceases to amaze me! She is of course a very different child from those of her own age but I must say that there are treats in her character and personality that I really admire!

She is always one to try things and she doesn’t just get upset or throws a tantrum, in fact when Amélie is upset (which is not very often) it is usually for a very good reason (hunger or being tired!) and once her need is seen to, she is all happy again!

We set on day 3 at Eurodisney as on the previous days, after a good breakfast and with the energy and enthusiasm still well set on all of us. However, the weather didn’t help us very much to start with, and we had to resort to buying some very fashionable (NOT!) rain covers. Amélie was in luck that I managed to find a really cool one from Mickey for her (although a few years in size too big…).

We went on the famous Pirates of the Caribbean (the ride that inspired the famous movie) and Amélie really enjoyed it. The quick falls on the boat,pirates singing and all the colours and movement really caught her attention and at the we even got a lovely official photo at the end!

We went to a few more rides (Pinocchio, Snow White…), and some that Amélie was too little to go to (grandma kindly looked after her) and we also visited the Disney Studios where we watched the Disney parade while Dad and Auntie Katy went on the Tower of Terror (my worst nightmare – a ‘free falling’ lift), I wish I could post THAT official photo of the two of them here!

We went back to the hotel for a little rest and a well deserved swim. Amélie loves swimming and goes around the pool on her own in her Hello Kitty rubber ring, very cute to watch and very enjoyable for her!

I wanted to go back to Phantom Manor, which was my favourite attraction when I was first taken to Eurodisney with my parents. We did worry that Amélie might get scared but we thought that she had been so good in all the other rides and enjoyed them, this one would probably be no different. We were right! She really enjoyed the haunted house, she was looking at all the ghosts and smiling… and even tried to reach and grab a few!

Dinner was great too – we went to planet Hollywood and the food was amazing! We even allowed the little miss to have a very sweet dessert (naughty, I know, but well deserved!).

We stayed for another day and night… we revisited some of our favourite rides, took the Mississipi boat, went on the train and had plenty of fun!

I definitely recommend taking the children there. Particularly special children of any age, the stimulation, the ambiance and the care from all the staff just makes it a special place, a happy place where is easy to make unforgettable and happy memories!


The Importance of Portage

Isabella and Jenny

Earlier this year, before there was even a hint of a diagnosis, Isabella was referred to the Portage team.  I had never heard of it before, but now it is our most important appointment every week.  So what is it? . . .
Portage is a home visiting educational service for pre-school children with additional needs.  In short, we call it special play time.
Our Portage home visitor is Jenny and she comes once a week during term time and spends at least an hour playing with Isabella.  It is not just any old play though, it is completely specific to Isabella’s skills and focuses on her retaining these skills for as long as possible.  Repetitive play is the key.
When Jenny first came to visit I was completely at a loss when it came to play.  I tried everything that I could think of but Isabella was no longer interested in most of her toys and would not play by herself at all.  The only thing she wanted to do was take bricks out of a box and pass them to me.  I spent day after day trying to encourage her but nothing would work.
Jenny has many years of experience and knew exactly where to start and gave me lots of ideas to start working with.  Our first task was to put together a special play box with around six different activities in.  These include a box of six bricks, musical instruments, glove puppets and objects to represent songs.  Each item is played with in a specific way and encourages different types of play.  The repetition of play means that Isabella anticipates what happens next so for example when the glove puppets come out, she knows to hold their hands as we then sing ‘Ring-A-Ring-A-Roses’.  With the box of bricks, she takes them out one by one and passes them to me, like she was doing before, but then she takes the bricks back again and puts them back in the box.
It might sound like no big deal to most parents but to a parent of a child with Tay-Sachs, this is a big achievement.  Isabella will gradually loose these skills but for the moment as she holds onto them and occasionally gains new ones we can only rejoice.
Portage is always such a positive experience, we focus on what Isabella CAN DO rather than medical appointments that talk about what she can no longer do.  We look forward to Jenny coming to play each week, it keeps me going to face the challenges that we face for the rest of the week and for Isabella it is simply fun.
Thank you Jenny and thank you Portage.
For more information please see Portage’s website.

Eurodisney – day 2, fresh and excited!

‘Minnie’ Amélie

After a lovely breakfast it was imperative to get Amélie accessorized appropriately for the occasion. So we quickly went to the shop at the hotel and started by getting Minnie Mouse ears (a must if you are to enter the Magic Kingdom), a little handbag (a must for any girl) and a pick of a soft toy (to cuddle on nap times) strangely enough Amélie picked Pluto, so it seems that her dislike for dog soft toys has passed…

It was so lovely to watch as Amélie looked at everything with such excitement – the people, other children, the beautiful streets, the bright colours…

The first land we visited was Fantasyland – the land of Pinocchio, Snow White, Peter Pan and Alice in Wonderland, the land of fairytales!

The Mad Hatter’s Tea Cups seemed like a good choice for a first ride and Amélie was more confused than anything else, I suppose being really little and not being able to see much outside of a giant cup going around in circles would confuse any one. In any case she seemed to enjoy it!

The day was full of rides and little breaks for food and hot chocolate.

Definite favourites were:

- Peter Pan´s flight – we got on a magical flying boat and suddenly we were flying above London at night and then we were in the land of pirates running from Captain Hook! Amélie quite enjoyed it, I think the movements of the boat were quite exciting and the lights were really catching her eye.

- It´s a small world – every child´s (and my mother´s) favourite. We got into a little boat, this time in the water, one of those that you would only really imagine existing in a land of fantasy, and were taken around the world, a world of tiny dollies from all nations singing ‘it’s a small world’. The sparkly bit just before the end was Amélie’s favourite and she even graced us with a little bit of a dance.

We moved on to Discoveryland – the land of the future!

We had already hopped on Buzz Lightyear Laser Blast the previous day while Amélie was asleep. But Amélie’s father is such a competitive human being that he thought he would better his score and so… we went again (and after this time we went again, and again… and then I refused but they still went again!). Nevertheless it’s a lovely ride even for the little ones that just sit on the parents’ lap. We got on the space shuttles and had a laser gun each and a control and were supposed to hit all enemy (robot toys) targets and get as many points as possible. The ride was really bright, full of colours and the big robot toys (despite being the enemy) were really amazing to see! Amélie really enjoyed it for totally different reasons from her dad…

We had an amazing dinner at the Rainforest Cafe, where some gorillas sitting above our table would sporadically come to life and make gorilla noises (I suppose) and ended our evening with coffee and hot chocolate back at the hotel bar.

It was way past bedtime for Amélie who usually gets really moody when it is past her bedtime (I think most parents deal with this), well this does not happen at ‘The Magic Kingdom’!

Still to come on day 3 – a very brave Amélie tries to grab a ghost at Phantom Manor (the haunted house) and searches for Jack Sparrow at the Pirates of the Caribbean!

Two days completely not about Tay-Sachs and another one to come!