Sunday, 19 September 2010

Afternoon tea at the House of Lords

As part of the Costello Conference we were very privileged to be invited to the House of Lords to celebrate the launch of the RASopathy Network. It's been discovered that a collection of syndromes, such as Costello (what Lilian has) cardio-facio-cutaneous and Noonans all share the same genetic pathway. By grouping the syndromes together in research and pooling resources more progress can be made into fully understanding them. 

Our fancy pants invites to the House of Lords.
On Friday morning everyone got dressed up in "smart casual", tried to eat breakfast without getting eggs down their fronts and then jumped on board a couple of coaches. The traffic into London was okay and we went via Knightsbridge which the non residents of London enjoyed. On arrival at the the Black Rod Gate entrance to Westminster we were ushered through security at a slower pace than the airport - ultra secure! We also found out that Westminster was closed to the public for the day and we were all special guests.

Waiting...still there

We all met in Westminster Hall (built 1097) and waited for our tour guides. As Lilian was in her pram and we were special-enough guests we were taken around the back route to get up the stairs at the back of the Hall. We got to see the real inner workings of Parliament and what terrible taste they have in carpet and wallpaper.
Apparently a good tennis court for the King.
The tour itself was rather good and as we were one of the few groups to be there waiting was kept to a minimum (Mette went with her mum a while back and said it was really busy). Lilian was very good throughout and either slept or was carried by me. However she showed her punk ethic and performed a dirty protest when we were shown the House of Commons. I doubt many people can claim to have had their nappies changed behind the Speaker Chair! And no we didn't out the dirty nappy in the dispatches box. Good idea though.

Just behind here to the right.
The reception itself was excellent and it was the best afternoon tea I ever had. Lovely the tiny cakes, scones and sandwiches. It was very interesting to hear all the different speeches and it gives us hope that centralized / specialised care for rare syndromes might exist in the future and that there is as possibility of treatments in the future. 
The picture on the left is of Lilian and her Australia friend Nicola plus her mum and dad. 
The reception was held in the Cholmondeley Room in the House of Lords. If you look at Westminster from the South side of the river you can see two "tents". One with a green striped roof to represent the Commons and a red one for the Lords; we were in the red one.
The two tents.
It was strange to be this side of the fence. Lilian regularly attends the hospital (St Thomas') that's opposite Westminster. Mette had to stay a couple of nights there herself and had a room that overlooked the scene we were attending.
St Thomas' in the background
Good view.



colin said...

the video of the speeches will be available shortly by 6pm today, it is taking time to upload.



Don't forget to join the forum at the Rasopathy site above

Great photos.

Ida said...

Love the photos! .. House of Commons, well done Lilian (think daddy should've left them a nappy surprise tho).

You guys look so pretty, I love Lilians yellow dress!

Looking forward seeing you guys on thursday!

benilhalk said...

Great to see your pictures of afternoon party. Really happy to see that you all enjoyed the day. Now will surely have something great for my tea party that will be arranged at one of San Francisco event venues. Will surely do best arrangements for the day with help of my sister.