For those who don't know our story, and those who have heard about Chloe-Palooza but wanted to read more about the WHY of Chloe-Paoolza, my friend and fairy GodMother Laura has asked me to post this really long letter out to share our story. So, sit back, grab some popcorn, and tissues and have at it.
To whom to may concern,
My name is Jessica Auner, my situation is a bit long and complicated. I'll start from the beginning. Five years ago my husband and I became the first in our immediate families to own our own home. It is a small 3 bedroom 1bath block home on a corner lot in a quiet neighborhood in Garden City. Shortly after we bought our home we discovered that the crawl space below the floor was filled with standing water and 4feet of mud. We drained the water fixed the problem and waited for the mud to dry. Little did we know that the foundation was weakened and that now we were growing mold under the house. Little by little over the last 5 years the joists in the floor have given way until now the entertainment center is suspended from the ceiling to make sure it doesn't topple over and several rooms bounce like on a trampoline. The unevenness of the floors has caused the walls to crack and that helped us discover that there was lead paint on the walls. We saved where we could and just when we had a bit of money together to fix the floors we found out I was pregnant with number 3, our first girl. Complications started about 6 months into the pregnancy and she was born a month premature weighing only 4 lbs. By 11months old we were beside ourselves with worry because she has missed all her milestones. She could not sit up or hold a bottle, crawl or do anything her two older brothers did at that age. So the testing started. We meet our $3,500 per person deductible in one month. January came and by February we had met it again. Finally on August 30th we received a diagnosis over the phone from the geneticist in Augusta. Rett Syndrome. Chloe would never walk or talk, she would have breathing problems, seizures, ataxia, we would watch her lose all purposeful hand use and eventually she would die. We were devastated. But you can't stop so you keep going on. We applied for and won Social Security Disability and Medicaid. We were told this would help pay the deductibles and the copays. We didn't realize that in order to keep it my husband could only make $4,000 a month before taxes. He took a $500 pay cut and stopped getting over time.
Seeing us struggle my aunt made us a very generous offer. She would give us an empty lot around the corner from us and she would be the banker for us for $50,000 to build a house that was safe and healthy and most importantly would adapt to Chloe's new lifestyle. We have an architect that is willing to draw up the blue prints and a printing press willing to print them. My husband is a licensed plumber and we have several friends in trades. We have also found a crew willing to frame the house for rock bottom price. The only problem is my aunt has told me we need $30,000 before we can begin building.
After much prayer and thought we decided to have a fund raiser. Thus Chloe-Palooza was born. It will be on May 5th from 11am to 5pm. There will be live bands, a car show, a silent auction, vendors, a raffle, bouncy houses, a rummage sale and possibly an art show (though, I have yet confirmed that).
I'm a mom, I just want a house my daughter can use her gait trainer in while she can still use it. Using it actually prolongs her life by keeping her mobile but she can not use it in our house. And when she can't, I want to be able to care for her at home. I want my son's allergies and asthma to go away and give him relief when he's in his own home. I want my husband to see the light at the end of the tunnel isn't a train about to hit us with the weight of the world he carries on his shoulders. And I want to go to bed at night without the thought that I can't do a good job of providing their needs.
I am in need of so much, advertising, sponsors, volunteers, prayer, wisdom, you name it I probably need it. If you can not help me I completely understand and I am very thankful you took the time to read this novel. However, if you can help me, my number is (912)965-9827 and my Cell is 596-6473.
Sincerely,
Jessica Auner
Chloe had a great time today at the Easter Eggstravaganza in Garden City. She got a special visit from the Easter bunny and her brothers went hunting eggs and brought some back for her. We got to see lots of family and friends while at the park. Mommy and Kysia set up a booth to raise awareness for Rett Syndrome and promote Chloe-Palooza. Many people came by and showed us love.
