New To the Group...last month....First surgery coming up....

[Guest guest]

Hi ,

I just found this website and have learned so much already!

There are so many similar findings and concerns.

Thanks to all that have taken the time to reply to me already.

I have been reading every message I can and can't believe that there

are so many people with such great and helpful information.

My name is Holmes and we live in Albany New York, USA. My

12 mnth old (born 6/23/05) McKenzie has BPES and Hypotonia = low

muscle tone. I am told by the geneticist that " low muscle

tone " is not associated with BPES - that they are two separate

issues, non-the-less she is delayed.

BPES - there is no family history,it's been so fustrasting trying to

figure this out. We are still coping.

McKenzie's BPES has been hard for us, we have blamed ourselves,

asked why...cried and worried - now I am ready to work with it,

accept it, learn and help others. Tomorrow morning, July 12th

McKenzie will visit with Dr. Meyer,MD, FACS a professor of

Ophthalmology and a Ophthalmic Plastic Surgeon here in Albany, New

York. We will discuss her first surgery. I am anxious. It's nice to

know there are people are out there, we have felt so alone in this.

Only now, after having this support do I feel ready.

Sincerely,

Holmes

Albany NY USA

kimholmes2005@...