UK people get-together - Sunday 13th May

[Guest guest]

HI again

Looks like at least 8 families would like to come on this date. So - with that in mind - please assume this to be the date for the next get together.

More details soon.

Regards

Shireen

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Shireen MohandesSent: 12 February 2007 20:53blepharophimosis Subject: blepharophimosis UK people get-together

Hi

I'd like to start making some plans for a get together in England, probably in North of London this time, maybe in Bedfordshire.

Here are some dates to start the ball rolling;

Sunday 13th May

Or any of the Sundays in June.

If people would like to come along then please let me know.

If we can't find a date that suits a lot of people then we can try for a little later in the year.

For those who have not been to one of these get togethers before, we normally meet around 11:00am for coffee. It is all very informal, plenty of kids, a few grandparents and lots of little people.

Please get in touch with me directly - rather than us all bombard the bulletin board.

Regards

Shireen

[Guest guest]

The Teales will be there.... Thank you Shireen. clare Shireen Mohandes <andy.bowles@...> wrote: HI again Looks like at least 8 families would like to come on this date. So - with that in mind - please assume this to be the date for the next get together. More details soon. Regards Shireen From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Shireen MohandesSent: 12 February 2007

20:53blepharophimosis Subject: blepharophimosis UK people get-together Hi I'd like to start making some plans for a get together in England, probably in North of London this time, maybe in Bedfordshire. Here are some dates to start the ball rolling; Sunday 13th May Or any of the Sundays in June. If people would like to come along then please let me know. If we can't find a date that suits a lot of people then we can try for a little later in the year. For those who have not been to one of these get togethers before, we normally meet around 11:00am for coffee. It is all very informal, plenty of kids, a few grandparents and lots of little people. Please get in touch with me directly - rather than us all bombard the bulletin board. Regards Shireen

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[Guest guest]

Hi to all

My name is Therese I am new to this site and I have a little girl

called Esme who is nearly 3 with Bleph. I have never met anyone with

the same condition and i would be so happy to meet any of you as I'm

sure Esme would also be quite fascinated.

I have only just noticed that you had a get together in May . Are

you likely to meet up again this summer? We live in Devon but could

easily travel to London or anywhere in the UK for that matter.

I am currently in the hands of Mr R Collin (Moorfields/Harley

street) who suggests that Esme should have a sling op later this

year /next year possibly but Im not convinced that I want to change

her adorable little face and fear it may make her look operated on

and scarred just for the sake of one line in a visual acuity

chart.Yet I also notice how happy and excited she is when I tape up

her eyes with steri strips and how she doesnt have to tilt her head

back.

So we would love to glean a greater insight from anyone in or who

has been in the same boat.

Esme who we all call bunny is incredibly loving and emotionally

charged she is extremely funny yet very compassionate and highly

charged. she also suffered with colic when she was a baby from about

10-12 weeks and screamed nonstop for the next few months so much so

that i had to contantly carry her out on the balcony so that the

neighbours didnt think we were murdering her or something it was so

embarrassing as well as exhausting!!

PLease let me know if you fancy meeting up or whether There is any

ore get togethers arranged monthly etc

Therese