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

July 12, 2006

Hi ,

Not sure if you will have seen the post the other day - there have

been so many posts - but just wanted to say good luck for today. I

hope it goes well!

Take care, Leah and Abbie

>

> 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@

>

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