Re: Hello I'm Laurel and my daughter Hester has BPES. She is 19 now.

[Guest guest]

Hi Laurel

Welcome to the group. My daughter, Kirsten is 5 yrs and has BPES.

Kirsten was also treated at Moorfields and we are all thrilled with

the result. She has just had her final lid lift and she refers to her

eyes as 'her new eyes'.

I am responding because Kirsten does have other problems besides BPES

and no link has ever been confirmed. She has speech problems related

to a floppy soft palate and is slightly hypotonic. She is about 6

months behind in her gross motor skills. She had surgery to her palate

which has significantly improved her speech and she is now

intelligable to a stranger. Till she was 4 we were using Makaton sign

language which she has now dropped altogether. She is in a normal

school and in the appropriate class for her age group. She is coping

well so far and learning to read and write at the same pace as her

classmates.

What is a nonverbal learning disability? How lovely that she will be

working with animals.

Regards

Parsons

Colchester, UK

>

> Hi, I'm not used to these message groups so it might take me a while

to

> get the hang of it. My daughter has BPES, and has the most beautiful

> eyes thanks to fantastic surgeons at Moorfields in London. We are

just

> investigating other problems that have come up for Hesti, such as

small

> stature, and low weight, and also a diagnosis of NLD (Non verbal

> learning disability). I wondered if any other members had

experienced

> other difficulties in addition to BPES. Hester has just finished a

> National Certificate in Animal Care, and is trying to find her way

in

> the working world. Be nice to hear from you all.

>