WE HAVE UPDATED FOR MAY!
Click here to catch the details, and of course there are pictures. Click here to see the them.

Thanks,
The Lee Family

Welcome to Cyann's website! This site was created in the spring of 2004, during a time that I had been laid off of my job of 12 years. It was a form of therapy at the time, and has continued to be.

Although the original purpose of this website was to shed a little light on the rare genetic kidney/liver disease called Autosommal Recessive Polycystic Kidney Disease/Congenital Hepatic Fibrosis, or ARPKD/CHF, for short, we now have something new to be concerned about. It is yet another "rare" genetic disease, basically known as Cowdens Syndrome, or BRRS (Bannayan-Riley-Ruvalcaba Syndrome...the childhood form of the disease). Apparently both diseases have recently been renamed to be known as the "PTEN Hamartoma Tumor Syndrome", but we tend to refer to it as "Cowdens Syndrome", as a universal term, be it accurate or not. Both diseases are potentially life threatening, yet most doctors have never heard of, or have very little knowledge of, either disease. It is becoming a learning process for all of us involved.

With this being said, please read Cyann's story and then check the Updates section for the latest updates. They start with the most recent going back.

On the lighter side, since ARPKD affects the whole family, it would be hard to separate it from other family things. So we are also making this a place where we can share pictures, old and new, and any updates regarding our family.

By the way, in case anyone is wondering...our daughter's name, "Cyann", is pronounced ('Sigh'-Ann), and is a derivation of Cyan, which is a shade of turquoise/light blue. (You may come across it when you change the ink in the printer, for instance.) My husband, Scott, who is a graphic artist/web designer, came up with it, and I added the extra 'n'. A lot of people tend to confuse it with "Cheyenne" or "See-Ann", so it would seem that we have unfortunately cursed her with a name that she will forever have to spell and pronounce for people!

Thanks for viewing our daughter's site,
Sheri (Mom)

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The PKD Foundation : For Research in Polycystic Kidney Disease
Phoenix Children's Hospital