Welcome to Ryland's Web Page. It has been provided to keep people updated about Ryland's Holoprosencephaly(HPE for short)and just what goes on day to day. We found out about Ryland's HPE after a CT Scan done at his 4 month check up and also had a MRI at 9 months to get a better look at his brain. Ryland has Severe SemiLobar-HPE which is the moderate form but more at the severe end of semi-lobar. HPE is a rare birth disorder caused by the failure of prosencephalon (the forebrain of the embryo) to properly divide, causing defects in the development of the face and in brain structure and function. You can find out more about HPE at The Carter Centers web site. Thank You for stopping by. You can also check out Ryland's other website for more info. Rylands new caringbridge site www.caringbridge.org/visit/rylandjesse

Welcome To Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a
disability-to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel.

It's like this...
When You're going to have a baby, it's like planning a fabulous
vacation trip- to Italy. You buy a bunch of guide books and make wonderful
plans. The coliseum, Michelangelo�s David. The gondolas of Venice. You may
learn some handy phrases in Italian. It's all very exciting.
After a few months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says

"Welcome to Holland."
"HOLLAND?!?" You say. " What do you mean, Holland ? I signed up for Italy!
I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
"But there's been a change of plans," says the stewardess.
"They've landed in Holland and there you must stay."
The important thing is you haven't landed in a horrible, disgusting,
filthy place full of pestilence, famine and disease. It's just a
different place.

So you must go out and buy new guide books. And you must learn a whole
new language. And you will meet a whole new group of people you would
have never met.
It's just a different place. It's slower paced than Italy, less flashy
than Italy. But after you've been there a while and you catch your breath,
you look around and you begin to notice that Holland has windmills,
Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and
they're all bragging about the wonderful time they had there.
And for the rest of your life you will say,
"Yes, that's where I was supposed to go.
That's what I had planned."

And that pain will never, ever go away because the loss of that
dream was a very significant loss.
But if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special and lovely
things about Holland.

Above is how old all the Kids are


Free sketch at dumpr.net






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Journal

Monday, January 11, 2010 9:22 PM CST

For more updated info, Visit Ryland new Caring Bridge site at www.caringbridge.org/visit/rylandjesse

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E-mail Author: rylandsmom350@yahoo.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.