Trying raise some money for a good cause

Road Block · 03-11-2009, 09:21 AM

This is a message from a couple from my home town. I went to Jr. High with them and just got in touch with them. I read their story and it moved me. I feel like I have to do something. Please read the following.

I want to take donations, checks, cash whatever, and I am gonna ride down to the event on the 4th and deliver it to the Larry, Shannon and family. Anything you can do to help would be appreciated.

I will post up the details of the ride to Scottsdale later, any and all are welcome to go with.

Welcome to Hannah's Entourage on facebook: A great group of family, friends and even strangers, showing support for the Davila family's quest to raise awareness and funds to battle this rotten disease that so severely impacts their lives.

Tuberous Sclerosis is a disease that is as terrible as it sounds. Larry and Shannon Davila's daughter Hannah was diagnosed with it prenatally. Over the past 10 years, (yes, Hannah will be 10 this May!), they have dealt with many of its manifestations including seizures (almost every day), learning disabilities, autism, and tumors in her brain, heart, eyes, kidneys, and even on her beautiful face. When a tumor grew on her optic nerve, she even lost her sight and subsequently lost her right eye. We have had to learn big, scary medical terms, have far too many -ologists, know way too much about special education and therapy and give way too many pills.

We also have a fabulous girl! Hannah Joy is the best! She loves going to school, listening to music, cuddling, going out and about, and swimming. Arizona Make A Wish foundation gifted her an amazing swing set three years ago, which she absolutely loves. We swing every day! Other loves of Hannah are Shamu and her brother Zane. She cannot get enough of either of them.

So a great kid plus terrible disease equals determined parents. It has become our jobs to teach the world about our child and about her disease too. April 4, the Arizona Tuberous Sclerosis Alliance holds its annual Step Forward to Cure TSC. We need the support of our family and friends to fight this disease. To support Hannah's Entourage, please click on the following link. Your tax deductable donation can make a real difference in the fight against TSC.

We made this group to reach all our FB friends. If you are on our email list too, expect to see this note in another form as well. This is our all-out, multi-media donation blitz. Forgive us for nagging you - like I said, it's our job! Expect reminders!

Also, please pass this along to people you think might be interested.

chaos_reigns_01 · 03-11-2009, 09:54 AM

we donated already, c'mon people... if we can afford it you guys can too!

BloodDust · 03-11-2009, 11:44 AM

also in for the ride if work permits would love to see a chase truck to just in case :)

ars0n750 · 03-11-2009, 01:06 PM

For those who dont have facebook? any way to get some donation info and or info on the walk, date, time, etc?

Road Block · 03-11-2009, 02:21 PM

Share this page

I want to raise money too
Join this team

Our personal message:
Welcome to Hannah Davila's Step Forward to Cure TSC page! We are thrilled you are ready to help battle this disease along with Larry, Shannon, Zane and all of the other people who love Hannah Joy!

And what's not to love? Hannah is a great kid with a terrible disease. She was diagnose prenatally when doctors noticed an irregular heart beat. Since then, we have discovered Hannah has tumors in her brain, heart, eyes, kidneys and on her skin. She has had thousands of seizures and has tried tons of drugs. She has crazy sleep patterns and habits. She even lost her right eye after a tumor detached her retina three years ago. (Ocular prosthetics are not fun!) And although she is nonverbal, she is a great communicator using sign language, total communication and most recently a cool, computerized communication device. Even with all that to deal with, Hannah is a happy and hearty kid.

Our girl loves her people! She is very social and makes friends where ever she goes. Hannah loves to dance, swing, swim, listen to music and is her little brother Zane's biggest fan. Hannah is happiest when she is surrounded by the people who love her. She is also a great traveler as we have discovered on our many trips around the country to see TSC specialists (most recently to Cincinnati Children's Hospital's TSC clinic -- we leave for another visit March 10!). Her fav trip is to go to San Diego to see Shamu at Sea World. She loves him!

So please help us support the Tuberous Sclerosis Alliance by donating to the Step Forward to Cure TSC!

Please donate whatever you can to help this organization which funds research for Tuberous Sclerosis while supporting the families with information and assistance. Whether is it $5 or $500 (a girl can dream can't she), it will make a difference. Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me. We also understand if you can't donate but wanted everyone to read the update on Hannah. It's our job to teach the world about our girl and TSC.

If you prefer you can write a check made out to the Tuberous Sclerosis Alliance and mail it to us at:

The Davilas
2142 E. Willow Wick Rd.
Gilbert, AZ 85296

Both the Tuberous Sclerosis Alliance and Hannah's Family appreciate your donation. Many thanks for your support and your interest.

Love,
Shannon, Larry, Hannah Joy and Zane Davila

Thank you for visiting my Personal Fundraising Page. Don't forget to forward this to anyone who you think might want to donate too! :-)

I would ask that any donations that you would like to make would be check or money order, payable to "Tuberous Sclerosis Alliance" Any cash I collect will be turned into money orders as well.

LilBitDvl · 03-11-2009, 03:03 PM

I hate hearing about sick children. There is nothing more heartbreaking. She sounds like such an AMAZING young lady. She's a part of the Make a Wish Foundation and could have any wish she wanted and all she wanted was a swing set. What a sweetheart. I'll look tonight on Facebook and donate!

Road Block · 03-17-2009, 10:18 PM

BUMP

Just got this update on the event.

I will be headed down to Scottsdale AZ on the evening of the 3rd. Will go to the event on Saturday the 4th. I will be hitting Waffle House etc....

Here is the latest update on the brave little girl.

Shannon Pantelis Davila sent a message to the members of Hannah Davila's Entourage to Step Forward to Cure Tuberous Sclerosis.

--------------------
Subject: The walk is coming!

Thank you so much for joining Hannah's cause. I am so excited to have so many more people aware of Tuberous Sclerosis! Awareness is a huge goal of the TS Alliance and the annual Step Forward for a Cure walk. Another major goal is fund raising: so here is your weekly reminder. (Yes, I said weekly -- remember folks, it's my job as Hannah's mom to drum up as much support as possible.) Please contribute to this great cause. 100% of the money raised (which is tax deductible) goes to finding a cure. We are a small group so every penny counts. Thank you so so much to those of you who have contributed: friends and strangers alike. A huge thanks to Becky for sharing Hannah's story with all of her friends. The power of FB (and old friends) is amazing!
A side note: Hannah broke her wrist today. We are facing 6 weeks with a cast. It is a very sad day. I must brag though that Hannah was a champ at the hospital and is dealing very well with her pain and that damn cast. So help out a girl and dig deep folks -- we could use some cheering up around here!
Thanks, with love and appreciation,
Hannah and her mom, dad, and bro (Shannon, Larry & Zane)

chaos_reigns_01 · 03-17-2009, 10:53 PM

aw. pain sucks.

vegaseric · 04-02-2009, 07:15 PM

TTT

PK is in AZ now for the Step Forward for a Cure Walk. We are trying to get more donations to help this worthy cause. I'm going to kick in a few $$$... if you're interested in making a donation, shoot me a PM or post up to this thread and we can make arrangements.