WE HAVE UPDATED FOR
MAY AND JUNE.
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.

Back in 2004, this website was to shed a little light on our lives as we try to adjust living with the rare genetic kidney/liver disease called Autosommal Recessive Polycystic Kidney Disease/Congenital Hepatic Fibrosis, or ARPKD/CHF, for short. At the time, it was the biggest thing in our lives, and Cyann was at the center of it all. But as it turned out, arpkd/chf was JUST THE BEGINNING. In 2006, it was discovered through genetic testing that both Cyann and my husband carried a gene for something called Cowdens Syndrome, or BRRS (Bannayan-Riley-Ruvalcaba Syndrome...the childhood form of the disease.) There are several slight variations of basically the same syndrome, so there are several different names it may go by. In our world, we tend to refer to it as Pten Syndrome. It seems the easiest to say, spell, and explain! It refers to the P10 chromosome, which is where the mutation is located. (And actually, in our family's specific case, there is not a mutation, but rather a deletion of a piece of that chromosome.) Anyhow...it seems to be a rather rare disease, with very few doctors having ever heard of it, let alone having other patients with it. There was a time when tests were run to see if the diseases were somehow linked, but it was later concluded that no, they are two, very rare, separate diseases. Which, as you can imagine, really makes most of our various doctor visits pretty interesting!

Also back in 2004, we were really contemplating on the future and whether or not we should try for a 2nd child, given the 25% risk of that child being born with arpkd/chf. After what we had been through with Cyann, I think we were still leaning towards "no", but apparently God had other plans for us, because Zoey was born in March 2006. And, as our "luck" would have it, Zoey was confirmed to have both diseases as well. We've been told how highly unusual this is...to have one child that has not one, but TWO rare, genetic, potentially life threatening diseases going on in one little body...and then, to have a second child with the same situation!! It's like the same chances of hitting the lottery...only not in a good way so much.

And now, several years down the road from where this site began, we have been through a lot, and learned a lot. With still so much more to go through and learn. Our latest thing to add to the list is Autism, which is what Zoey was diagnosed with in Sept. 2009. In her case, it is a direct link from the Pten Syndrome. Although she was confirmed with the same things as Cyann, she is affected so much differently. Cyann is much more medically affected, with many more physical traits presenting. She has issues with her bloodwork and prescription changes and many more trips to the E/R. Zoey seems more "healthy" by physical standards. Her bloodwork is usually perfect and hardly ever has to go for a "sick visit". But for her, it's all neurological. And let me tell ya, it is WAY HARDER to adjust to having autism in the family than it was when it was just kidney disease!!! Put it all together, and it makes for an extremely busy calendar.

And so, this website is still mainly my online journal that I update once a month (when I'm on top of things!) to mainly just recap and vent about whatever we've been through. But if you are new to our site or our story, I invite you to read the link "Her Story" to start with. The Updates section is for the latest updates, starting with the most recent going back.

It's interesting for me to go back and read "Her Story" now, because there was a point where I even said that I wondered if there would ever be a time when I wouldn't 'freak out' at the slightest sign of a cold or cough. Well, somewhere along the way, yes, I did get to that point. (Maybe even way too far to the other side, because I'm really not phased by much anymore.) We pretty much have our hands full with each girl, but in different ways. It is what it is, and we just try to get done whatever it is that needs to get done. It's just "our normal". So I hope you enjoy reading about Cyann and Zoey, and our very busy lives!!

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! And Zoey...well, she was literally named after Cyann's favorite Sesame Street character in her first favorite book, and we liked the name, too. (But we added the 'y', so no confusion with it rhyming with "toe"!)

Thanks for stopping by!
Sheri (Mom)