Little Miss Avery

If you have been following along for awhile, you have most definitely heard me talk about my dear friend Lisa and her family. Not too long ago we were neighbors. However, life had other plans for us and we ended up out here in Arizona and her sweet family has also since moved on and started another chapter in their lives. However, the old phrase says, "Distance Makes the Heart Grow Fonder," and indeed it does! We continue to be great friends and are maybe even closer now than we ever were before. Although we don't live right down the street these days and the chaos we call life keeps us from chatting every single day as we used to, my heart will forever hold a special place for this darling family.

Meet Avery...she is one amazing child. She has defied all odds and is a true miracle.

Now read her story...this is all her mommy's writing...I took it off of her care page to share with you all.

Little Miss Avery came home from the hospital on Christmas Eve of 2005. I guess we should have known from her incredible birth weight- a whopping 10lb 3oz!!! that this little girl was anything but ordinary. On April 17th of 2005, when Avery was just shy of four months old she had a grand mal (genralized tonic clonic) seizure in my arms. At that moment I knew, I just knew that we were in big trouble. Forty eight miserable hours later we learned that Avery has Tuberous Sclerosis Complex (see www.tsalliance.org). TSC is a genetic disorder that causes tumors to grow in major organs, primarily the brain, heart, kidneys, lungs, and skin. Avery has multiple brain tumors, (also called "tubers" because of their 'potato shape'), skin, heart, and kidney tumors.

On January 9th of 2007, after battling daily seizures for six months Avery underwent a two stage brain resection surgery to remove two large calcified tumors in her left frontal lobe. Avery suffered life threatening post operative complications, including infection, and a blood clot that traveled to her lungs. Yet Avery defied the odds and came home from Cicinnati Children's three weeks after the first sugery. She then spent twelve weeks in an intensive rehabilitative therapy program in Kansas City.

Avery experienced almost six months of blissful seizure freedom before they returned in June of '07. Since then we have worked to gain seizure control with medication. Unfortunately on November the 2nd this year, Avery suffered a status seizure that lasted an hour. At first we didn't feel that she experienced any lasting effects from this prolonged seizure, but we are now noticing issues with balance, coordination, and the use of her right side. Avery continues to receive speech, physical, and occupational therapies each week. Further brain surgery is never out of the question, but something we are hoping to avoid. Despite the challenges Avery faces on a daily basis, she greets me every morning with a big smile. She is extremely curious, ornery, and loving. She LOVES trains (whoo! whoo!), cows (Mooooo!), and her big sissy, Kaylen (Day! Day!) Avery enjoys reading her books, playing with her toy piano, and chasing Kaylen. As many other families affected by TSC we live by the motto, "Avery may have TSC, but TSC does NOT have Avery!"

Now here is the deal. I need YOUR help to raise money and awareness for this amazing cause! I know you are out there...I have over 16,000 hits now and although I love my blog, they certainly aren't all from me!! This is your chance to stop lurking and make a difference! So please do just that!! And for the non-lurkers who do leave comments from time to time, we need your help too! The TS Alliance is hosting a walk in September in Kansas City. I have been planning to attend since last year's walk but since that is now not going to be possible, I am still registering as a walker and trying to earn as much money as I can for this great cause!!

It is REALLY easy! Just follow this link which will take you directly to "My Personal Fundraising" page. Click on "Sponsor Me" and just follow the steps. It appears to be pretty easy to follow but be sure to let me know if you have any questions!! You can also play around on there and visit the "Walkathon's Team Page" and see the other walkers and sponsors!!

**I posted this last night but I am adding in a tad bit more info!! I didn't mention above that all donations go to the TS Alliance and are put to use funding research on TS and the ultimate search for a cure. Also, if you do not have a credit card or would prefer to donate an amount NOT listed on the online link, you are more than welcome to send a check to me (made out to the TS Alliance) and it will get to the right place. ALL donations, no matter the amount, are just as important. Just click the "Email Me" link above and I'll get ya my address!!

Thank you all in advance...your help is appreciated far more than you will ever know!!