Thank you for visiting my fundraising page!
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many of you already know my daughter Ava, but if you don't here are a few little insights to my darling little bird. She is a beautiful, happy 4 year old girl (soon to be 5). She loves the movie Tangled, looking at her fishies and dancing (in her own way) along to Yo Gabba Gabba! She loves to give kisses to her family and friends (they are a little wet - but the best!)
I knew my girl was special since the day I met her. As her daddy lay beside us snoring in the hospital I held her close and just stared as most new mommies do and she did the most incredible thing; she giggled in her sleep. I was in complete shock and yet it made my heart soar.
Of course this was not the first odd thing that happened since my baby girl was born. She had a rough couple of weeks just trying to eat, and we worked and worked to get her to suckle at the bottle, but she got it down. Then things were a bit "normal" and yet not. She started missing milestones and although people always say things like "oh they all progress differently" we knew something was not right.
For the first year of Ava's life she was into nothing but her toys, grabbing her babydolls and pushing buttons on obnoxious toys that played songs that we memorized pretty quickly. Holding her bottle and even grabbing cheerios and popping them into her mouth. Although the hand function regression was slow it seemed like it was overnight. The toys became cool to look at and baby dolls are still fun to kiss, but she can't grab on to them and slobber them herself.
Needless to say, although my daughter is full of life and joy, that her smile could melt my heart on the coldest of days she suffers daily with a terrible, life altering disorder called Rett Syndrome.
Currently there is no cure for Rett Syndrome, but studies have shown that restoring MECP2 function may lead to a cure. One area of research is in the use of Insulin-like Growth Factor 1 (IGF-1), which has been shown to partially reverse signs in MECP2 mutant mice.
While this news is mind blowing and extremely exciting we want to keep the funds coming so that we can not only help my little Ava but all the other girls suffering with this disorder.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!