R: Re: New Member, Donna

[Guest guest]

Hi ,

On the 7th of December we will have a visit

with mr Collin for our little Caterina (2 years old).

You wrote:

Kirsten had her lid lift at

Moorfields eye hospital this January and will have

her further

surgeries there next year.

Could you give us more infos about your experience there

? Is important for us to understand what we have to effort. Shereen support is

really helpful for us and your experience could help us as well.

Thank you in advance and a big hug from Italy !

Francesco e Olga

-----Messaggio originale-----

Da:

blepharophimosis [mailto:blepharophimosis ] Per conto di

Inviato: giovedì 17 novembre 2005

12.49

A:

blepharophimosis

Oggetto: blepharophimosis Re:

New Member, Donna

Hi

Donna

From your previous messages it is clear that you

are getting loads

of appropriate care and advice from the medical

profession and that

is fantastic. A mothers gut instinct is very

strong and usually

right, so I have no doubt that will be fine.

The reason I travel from Harrogate to London every

3 months is that

we used to live in London and have always been

under the care of Mr

Collin. I certainly didn't want to lose the

priveledge of Kirsten

being his patient and so I do the trips. Kirsten

had her lid lift at

Moorfields eye hospital this January and will have

her further

surgeries there next year. We co-ordinate our day

in London so that

Kirsten sees the orthoptist first and then Mr

Collin afterwards in

the afternoon. Both parties are accomodating to my

circumstances. It

is a long drive (4 hours)but is the cheapest way

of travelling. It

is a good way of seeing my brother-in-law as we

stay with him when

we go down. He is particularly fond of Kirsten and

spoils her

rotten.

Must dash for the nursery school run. Take care

> > >

> > > Hi,

> > >

> > > My name is Donna and I have a 15

month old boy, who has

> > BPES.

> > > is a beautiful, happy baby

who we love very much and he

> > seems to

> > > have a knack for making everyone

who meets him fall in love

with

> > him.

> > > He has a 4 year old sister and they

adore each other.

> > >

> > > He is the first in the family with

BPES, so until he was born

we

> > had

> > > never heard of it. It is nice

to read messages and hopefully

> > learn

> > > from everyones experiences.

> > >

> > > has only recently started

crawling and standing and we

> have

> > been

> > > told by the drs. that this is

normal for someone with BPES as

> > mobility

> > > can be late to develop - did anyone

else experience this?

> > Although

> > > now he is coming on leaps and

bounds.

> > >

> > > It has taken time for me to pluck

up the courage to join the

> group

> > but

> > > I guess that I need to know more

about the surgery he will

face

> > when

> > > he is older.

> > >

> > > We live in the UK and would be

interested to hear from others

in

> > the UK

> > > so we can share information on

doctors etc.

> > >

> > > Best Wishes to you all

> > >

> >

>