I don't think I quite understood the challenges that we would be faced with on a daily basis with Mylee's condition, Arnold Chiari Malformation. It is becoming a reality that we could be faced with many more challenges. Our daughter Mylee Grace is almost 21 months old; she is not walking, doesn't talk much, and still tube fed because our baby doesn't know how to swallow properly. I don't know about you, but before we were faced with these challenges; I took for granted that I could walk (and even chew gum at the same time), I could talk without any problems, and I can eat whenever I want!
We have been blessed with a great family, a great extended family, lots of dear friends, and friends out there that we have not even met physically but who are dear to our hearts! Mylee will be a guest of honor at a benefit to raise money in her name for Arnold Chiari Malformation. We have chosen two charities that are near and dear to our hearts. ASAP has sponsored several ground breaking studies pertaining to Chiari, including the genetic study which has recently allowed researchers to identify the possible gene responsible for Chiari. Please help us raise awareness and give to these charities who need these donations in order to continue research for Chiari. Dave and I would like Mylee to attend Chiari camp when she is older. Please help us make the dream of Miracle Wish for Chiari a reality for all children with Chiari and other related illnesses to attend camp. Lets come together and bring awarness to our communities regarding Arnold Chiari Malformation!!
I have posted the Fundraiser information on the right side of Mylee's blog. Please view both the poster and flyer information. The website for these sites are also listed. Please view these websites and spread the word about Arnold Chiari Malformation!!!