Posts in Category: Blog Posts

Tea Party for Tay-Sachs Recipe #3 – Tacones

Fun for kids and adults alike, who doesn’t like a taco and a cone? Enjoy this recipe, it has been extracted from “The Vintage Tea Party Year” Book by Angel Adoree.

Ingredients:

Tacones

Tacones

2 tomatoes, coarsely chopped

juice of 1 lime

1/2 tsp of salt

450g (1lb) boneless, skinless chicken thighs

3 corn tortillas

1 tbsp vegetable oil

1/2 tsp sweet paprika

1/s tsp dried parsley

50g (1 3/4oz) Cheddar cheese, grated

For the salsa:

1/2 avocado

1/2 onion

1 tomato

1 tbsp chopped fresh coriander leaves

Preparation:

1. In a blender, puree the 2 tomatoes with the lime juice, 100ml of water and the salt. Transfer the puree to a large bowl and add the chicken thighs. Cover with cling film and refrigerate for 6 hours over night.

2. Preheat the oven to 200˚C/fan 180˚C/gas mark 6. Cut the tortillas into quarters and roll up each one to form a cone. Secure these with cocktail sticks, then place them on a baking sheet. Bake the cones for 5 minutes, then reshape them slightly, if necessary, before they cool. Place them on a wire rack, allow them to cool, then remove the cocktail sticks.

3. Set the grill to high. Remove the chicken thighs from the marinade, pat them dry and place them on a grill pan. Brush with the oil and sprinkle with the paprika and parsley. Grill them for 10 minutes on each side until the chicken is lightly charred and cooked through.

4. Meanwhile, make the salsa. Dice the avocado, onion and tomato, then toss them all together with the chopped coriander leaves.

5. Transfer the chicken to your work surface and allow it to stand for 5 minutes. Cut the thighs into strips. Layer the chicken, cheese and salsa upright in the cones to assemble the tacones.

Serves 12. Preparation time: 20 minutes, plus marinating. Cooking time: 10 minutes.

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

Equipment:

one or two 12-hole deep muffin tins

Preparation:

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 (1.in) 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.
 
HAPPY BAKING!!!

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

Ingredients:

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!

Enjoy!

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 – Join the event!

We would like to invite you to host a Tea Party for Tay-Sachs this August 2013!

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. You can also host it at your work place, parks, schools, on holiday… anywhere and with anyone who enjoys a piece of cake and a ‘cuppa’ (or a cheeky drink for that matter…)!

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 treats you are providing (suggested £5.00) and take a photo of your event at its best!

Theme: Tay-Sachs and The CATS Foundation! We have created our own Tea Party for Tay-Sachs Pack (click link to see what’s included) to help you customise your tea-party in style – CATS Foundation style, of course!

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 the prize…

1st PrizeTHE WINNER – an amazing cake delivered to your door!

2nd PrizeTHE RUNNER UP – a baking book – because you are AMAZING but obviously not quite there…

So here is a summary of the steps to take to participate:

1 - Fill in the contact form below. Party packs cost £5.00 for the first pack and an increment of £3.00 per pack thereafter. So 2 packs = £8.00, 3 packs = £11.00 etc

2 - Pay here for the Party Pack(s) - We are a small charity and not only we run ourselves like a small business we make sure every penny counts! We will only be able to send packs once the payment has been received. Please make sure you state your name when you make the payment.

3 - Keep an eye out for more posts related to this event. We will be posting recipes, ideas, videos, opinions etc., etc., right up until the event starts. Please feel free to share your ideas too.

4 - On the big day take a photo (or several) and send your favourite one together with the amount raised to us (email details will be sent as a reply to signing up). This will be your entry to the competition!

5 - That’s all folks! That simple! Enjoy!

Your Name (required)

Your Email (required)

How many event packs do you require

Your postal address

If you have additional information please include this below

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!

 

IMG-20130604-01314IMG-20130604-01315

You are not terrible!

A few days ago I came across this blog post via a friend on Facebook. I read it while I was putting my youngest daughter to bed and it stayed with me –  To parents of small children: Let me be the one who says it out loud - I wanted to let Steve know that not everyone feels like him, that he is not a terrible parent just like he says he isn’t but he is taking a risk…

I agree with Steve in many ways. I agree that those that go to work are not terrible parents, I agree that some parents are luckier than others on their children’s eating habits, I agree that being a parent is tiring because it is not a controlled situation – children wake up in the middle of the night, they cry, get upset, want to play when they should be asleep, need feeding, need changing, need dressing – need, need, need!

Here’s the thing – Steve, an adult, who seems educated and actually a good person spent 7 years trying to be a parent, did he think that children are born already taught?

Steve, do you not have your own habits, peculiarities, demands? Your son, who like Steve Jobs (as you mentioned) is so peculiar, would he have just been born like this? And so what? So what if he wants his plate or cup or whatever in a certain place? If this was your boss (since you call parenting a job) would you be writing a blog about him or would you be worried that he would read it and give you the boot?

No you wouldn’t Steve, you think it’s ok and funny and acceptable and NOT TERRIBLE to moan about your children because they are not going to sit you down and give you a run down of how you are doing your ‘job’ and do an appraisal on you! I’m certain that, like any other human being, you will have your good and bad points and your children accept them and love you unconditionally and they wouldn’t do a drawing of you at your worst.

I can see clearly that you love and are devoted to your children and that you are not a terrible parent but there’s something else you are doing – you are taking your children for granted! You are taking for granted their existence, their being, them coming down to you every morning, them being able to be themselves – demanding, peculiar, mischievous but also in your own words ‘delightful’.

I’m not going to hit you with the odds here – you are all fine and  hopefully will make it to old age and your children will be healthy and look after you (and I sincerely hope so) and when this happens and you are old and demanding and set on your own ways I hope none of them sits down to write a blog on the demands and how tired to the bone they are from looking after you. It would make you sad, I am sure.

I am going to tell you that some parents, like myself and so many others I know, have very different demands to meet for their children, they include medicines, feeding tubes, physiotherapy  doctors, hospitals, seizures, operations, grief and loss.

Parents like us are not ‘unlucky’ or so ‘rare’. The actual condition that affects our family is indeed extremely ‘rare’ but I have been to children’s hospitals a few times now and I can tell you that I have seen 2 years old as well as 13 years old who suffered strokes, 11 years old who had brain surgery, new borns with severe pneumonia,  a boy who turned 18 with a metal frame around his face and now incapable of moving at all, his duvet has pictures of him playing rugby… These are children of parents who wish they had their children being peculiar and demanding in the natural way. They are parents who are exhausted for the lack of normality, the worry, the anxiety, the fear for their children’s lives. They are parents who regret those times when they have ever felt that it’s not terrible to look forward to bed time. I would invite you, Steve, to read an old blog post of mine that touches this subject – We chose happiness instead. The cruel reality is that it can happen to anyone, to any parent, to any child. It doesn’t matter if you are religious or not, good or bad, if you have had a difficult life or faced hard times. I can tell you, because I know a lot of these parents, that it happens regardless.

I have a younger daughter, she is little still, and I know that she does not suffer from the same disease as her sister does, this is a relief of course, but it is not a guarantee! I don’t take her for granted, ever! I don’t wake up everyday thinking that I might lose her as I know I will lose my eldest, this is not what I am suggesting to you either, but whenever I have to get up for the 20th time because she is going back to that wire that is dangerous or am struggling for her to eat something that she devours when her dad is feeding her, I stop for a second and remember that I am her mother, I wished for her and conceived her and by bringing her to the world it is my ‘job’ to guide her, teach her and deal with her peculiarities, her demands, her being.

Being a parent is many times compared to a job (just like Steve does) and if it is to be so then it is the most important one in anyone’s career as it affects our children’s lives. If you have the job of a lifetime you work hard, you work long hours, you are proud and you tell everyone what you do. You won’t complain about your boss openly as you are too afraid to lose it, it is precious! Parenting should be all of this and more but most importantly not one to be taken for granted!

 

 

 

 

 

S for Special not for stupid!

Grace is 8 months old and understands that he sister Amelie likes to have her hand being held

Grace is 8 months old and understands that he sister Amelie likes to have her hand being held

 

My dearest (I think she wouldn’t mind me calling her friend) Deborah has just posted the following on Facebook:

‘I am thinking of making Isabella a badge to wear, it would say the following:

“My name is Isabella. I am 4. Past 4 and 1/4 and heading for 4 and 1/2. I can hear you. I can understand you. I just cannot talk to you. So please do not talk to me like I am a baby!!!

Thank you”‘

And I understand exactly how she feels. To be honest I have always found baby talk irritating anyway and it usually results in kids with a winy voice… but I shall not pass judgement for this is exactly what I’m trying to ‘raise awareness for’…

Instead of going around it the usual way, and explain what Isabella has and how she is a little girl who suffers from a horrible disease I’m going to try to bring it closer to home in a really easy way.

You, who are reading this, able bodied and hopefully healthy, try to imagine for a full 5 minutes not to be able to talk, or walk, or see clearly. So close your eyes if you must, start by asking someone to talk to you as if you are a newborn, remember you can’t express yourself via language or movement, let them go on for a bit, take it seriously, please.

Do you feel like an idiot yet? Is it nice? Would you rather this person wasn’t talking to you? If this was life, if you suffered an accident or had a terrible disease that lead you to such disabilities would this be the way you would like to be treated? No, I am certain no one would! I’m certain you would, if this exercise lasted long enough, break your silence and tell this person to ‘shut up’! But Isabella can’t, so she won’t and if she could she would probably be too polite to do it because she is lovely too!

No one chooses to be ill, to have disabilities, to be unable, but it’s everyone else’s choice to treat people with respect. I can assure you that Isabella and those who suffer from disabilities and limiting illnesses will never be disrespectful to you, that if they could talk what goes on their mind you would be astonished at their wisdom and their beautiful words, because they see the world differently, they don’t have malice, prejudice or any pre made judgements.

Next time you come across Isabella, or my daughter Amelie or another child or adult with special needs treat them with the attention and respect they deserve, touch their hand, stroke their head, read them a book, if you are unsure how to act just ask their carer, ask what is acceptable, if they can hear, see, what they like and don’t like, just as you would with any other child. Failing to do so you may risk them thinking that you are an idiot…

You also wouldn’t want to make a parent feel the way my friend Deborah and I many times have, would you? It’s a lot worse than people staring at your child having a tantrum. Our children are special they are not stupid!

I am going to take a risk and speak on everyone’s behalf here – Isabella, Amelie and the other children with special needs and their parents appreciate everyone that makes the effort and who shares this message.

Thank you!

 

Forgive us for not falling into misery…

Emily Rapp is a writer, she has always been a writer, it is her profession. So when I read the article – Obnoxious Questions People Ask Me About Writing About My Dying Son - I was beyond astonished that she had been asked those questions, but only for a second..

I first ‘met’ Emily shortly after I started this blog, she emailed me actually and we had a rushed exchange of emails. Emily hasn’t stopped writing, she is a writer after all, and I am wondering what the ‘gentlemen’ who asked her ‘Don’t you feel strange about making money off your sick son?’ were referring to? Was Emily, as a writer and mother, supposed to bottle it all up and not do what is the most natural thing to her? Was she supposed to write about the birds and the bees and pretend that she does not have a terminally ill child? What actually bothered these ‘gentlemen’ so much?

In a nutshell it is probably the fact that Emily is not miserable in the literal sense of the word. Emily did not go to her family doctor, asked for anti-depressive medication, turned into drinking, lost her house and lives from government benefits. Yes, this is how ‘gentlemen’ of this kind and other people perceive those who have sick and terminally ill children. Why? It’s just not something they really want to think about or deal with – so it would be easier if Emily was tucked away and had never raised any awareness to the fact that her child is ill, what their life is, what she feels towards it and actually doing the public a service by making a rare disease more known.

I wonder if these so called ‘gentlemen’ wrote to the Beckham’s and asked if they ‘felt strange’ for making money out of their son’s modelling for Burberry… and yes, the money probably did go to his trust fund. The fact is that he is underage and modelling is a job, so one could argue that too! No I bet they didn’t, because it is not an uncomfortable situation.

And this brings me back to me only being astonished for one second at this article, because memories of attitudes and words and questions came running to my mind on how people are able to say and act in the most insensitive and inappropriate ways.

I don’t think we are special, I never have and indeed I would, very much like Emily, give absolutely anything including my life to save my daughter, nothing is more important than her.

As Emily turned into writing about her son, which is what she does best. We turned into starting a Charity in the UK specific to Tay-Sachs. Did we do it for attention? No. Did we do it to be thanked? Definitely not! Did we do it to stress ourselves? Absolutely not! Did we know it was going to be a challenge? Yes! So why did we do it? Because we did not want other people in the same situation to feel what we did, we did not want others to leave hospital with an awful diagnosis and only have wikipedia to give them the info and to only have really good charities in the US who could support them. We didn’t want families to think that they were alone because we knew they weren’t.

One would think that perhaps in this situation we would not have heard atrocities such as what Emily, very undeservedly, heard. But yes, we have!

We have people questioning and commenting on how I am the one who earns a living and Daniel doesn’t. And more recently I even had someone trying to play the ‘my husband got me this really expensive gift’ card, yes shocking, but true!  The reality is very simple – I really could not care less what other people think on this matter or what they have or do not have! To me is very simple – my husband looks after our 3yrs old daughter and helps her with absolutely everything she needs, and she needs a lot of help. He also runs a charity pretty much single handedly, giving all his hard work and time to other children and families in the same position as ours and successfully raising awareness for a disease that we would not wish upon any one. So if someone delivered Brad Pitt plated in gold and encrusted with the Crown Jewels to my front door, I still wouldn’t swap!

We have people telling us we cannot protect our daughter from everything  – Well you are right, in fact we cannot protect her full stop. And this is the issue here, isn’t it? I would like these people to come back to me once they close their eyes and imagine what it would be to have to discuss and decide wether to place their own child on a ventilator or not when the time comes, not if the time comes. This is the difference, the time will come. So yes, I will protect my child how I see fit, my apologies for the inconvenience this may cause to others.

‘I’m doing this for you!’ – Well then don’t, please. If you needed a transplant and I was a match I would give it to you, I would certainly not come back to you and claim on my kidney or bone marrow, or keep on bringing it up how ‘I did it for you’. It is very simple, if you are truly someone who cares for us you do what you want to do, a lot or a little, every bit counts, and we are very grateful to those who are on our side, but doing it for self gratification or to be thanked it’s certainly not the right reason to do it.

I suppose it comes with human nature, there is always that little bit of envy that people are doing well in some aspect of their lives. People like to think and feel that they are the best and when someone does something good some cannot help themselves but to take a dig at what they may perceive as a ‘success’. Well, let’s be perfectly clear here, that for us success is not a word in our vocabulary. Being parents is the most important job anyone could have and ultimately we are failing our child for we cannot save her or protect her from an illness that we unknowingly inflicted on her  - so to who once wrote ‘we feel you have set yourselves to blame us for what is happening to you’, we don’t, we feel you are the most selfish and uncaring people, but if there is anyone to blame for her illness that would be ourselves!

Above all this we will not apologise for not falling into misery, for not going around crying, for not giving into wanting others to pity us or our child. We are not saints, and I don’t believe in saints, we are trying to do our best every day in the only way we know.

And mostly I want to thank those who have been a tremendous support in the past year, both to our family and to The CATS Foundation that is so important to us. To those who listen without judging, who offer with no strings attached, who are simply there as we need them to be.

And to Emily Rapp for being honest every step of the way, in a journey that is so hard and heartbreaking, for being brave and positive, and showing those who can really see that life is full of beauty, that our children with all their limitations and short life are indeed amazing in ways that only the right people can understand!