Posts in Category: Activities

Eurodisney – The arrival day!

Amélie, Daniel, Aunty Katy and Patricia at the entrance of Eurodisney

Our trip to Eurodisney was absolutely lovely!

We set off on the early morning Eurostar from St Pancras and enjoyed a nice and uneventful trip. By the time our stomachs were ticking we were having lunch at Annette’s at the Disney Village just outside the park!

Amélie had her first picture with Mickey Mouse ears when strategically placed on the high chair and we enjoyed some lovely hot dogs in true american style!

Amélie with Mickey Mouse ears







Amélie entered the park during her nap time, and although she was not yet asleep she was close to and did have a nap soon after.

So we seized the opportunity and as grandma kindly offered to stay out with Amélie we went on the Star Wars ride (a must for those of our generation) and enjoyed our first cups of ‘chocolat chaud’ and ‘cafe au lait’!

As tiredness started to set in, we went off to check-in at the hotel, Newport Bay, and were pleasantly surprised by the lovely rooms where we even found Nespresso machines!

The rest of the day and evening was spent with a little walk through Disney Village and a cheeky drink and as Amélie was tired from the whole trip and long day we set off to the buffet dinner at the hotel.

Bedtime was later than usual and a very tired girl went off to sleep easily and deeply.

We were all excited by the prospect of the next day and taking a refreshed and happy Amélie on many rides and have a lovely day!

Read all about it on the next post, to come soon!


Picnic in Greenwich Park


Greenwich Park

Shortly after Amelie’s diagnose the sun came out in London and it seemed that Spring was finally here and calling for Summer (this has not been the case…).

We are fortunate to live very close to a beautiful park – Greenwich Park – and to have made great friends with some of the mothers and babies we met through our course at NCT.

T and A were born one day apart, in fact their mothers ended up in the same ward at the hospital, Amelie was born at the same hospital two months later.

So being friends since bumps and mostly since they were little babies we all decided to make the most out of the first warm day of the year and organized a picnic in Greenwich Park.

I must admit that just hours before going I was a bit reluctant and almost called to cancel. I knew now that Amelie would not be able to follow them on their playing as she used to when they were all little. And I think I was worried that she would realize this and be sad and frustrated. In any case I also though that this was just me speculating and that she seems to cope with it all without much second thought and just gets on with doing what she wants at her own pace and has been finding her own way to move, to communicate and to enjoy herself.

And this is what happened then. We laid down the picnic blankets, H provided the drink and food for the children and J provided a feast of food, I was requested to bring dessert, which has always been an easy task for me as I know just where to get it. T and A were running around and trying to explore the park, and looking at the lake and the ducks and of course Amelie cannot walk so she could not do this. She wasn’t upset though, she made the most out of eating all the food that she could – at times even trying to pick from others’ plates…- she played with the toys, enjoyed the sunshine and got loads of cuddles, even from her little friends.

T  kept on stroking her head really carefully and even brought her the sippy cup for her to have some water.

I wondered, not that he would know of course, but if he could feel, that his little friend is special and needs more attention… they used to go swimming together and have always got on really well, but this was definitely, more than that, it was a gesture of care!

We had a great day! Amelie loved going out, enjoyed the food, getting cuddles and seeing her little friends.

She is not one to let Tay-Sachs take over her day, and I am so proud of her for that!


A visit to London Aquarium

Amélie, Daniel and Patricia at the London Aquarium

We have a thing for fish in our house… in fact, Daniel has always had a thing for fish and so Amélie had no other option but to marvel at our enormous fishtank (one of many) since she was a newborn.

Since she was tiny we used to sit her on her bumbo chair on top of the table and she always rejoiced at looking at the bright colours, watching them move and what she loved the most was to tap on the glass and at times to lick it…

I found it quite endearing that while at Evelina hospital Amélie really loved to go and watch the fish tank they had there, I think in a way it was more than the colours and the movement that made her smile, I think it reminded her of home too.

A few weeks ago we decided to take her to the London Aquarium again (the first time we took her we timed it badly and she was asleep all the way through…), so with better timing in mind, a baby carrier and (thankfully) a very strong daddy we made our away to the Aquarium and had a great time. Amélie was so happy to see all the fish, the colours and movement but her favorite were definitely the turtles!

It was a lovely day out and not too straining as it only takes around one hour to go around the aquarium if you look at everything in detail.

Dad had a great time as well and still thought his fish tank was better than any other there (secretly I think this is why he likes keep on going there).

For more information on London Aquarium click here.

In the end we got a lovely family picture which we keep on Amélie’s room and we had a great family day out!