I just turned one year old on Nov. 10 and I have something important to say. I was born with Angelman Syndrome (which you probably have never heard of). My mommy and daddy spent 11 months advocating for me to find the reason why I have significant developmental delays and various other symptoms.
I am 1 in 15,000 with this rare neurogenetic disorder. It’s often misdiagnosed as autism and cerebral palsy. The good news is there is a CURE on the way. I need your help and it would be the best Christmas gift of all if you would consider donating.
If you don't know how much to give, might I suggest $101.18 (10.1.2018 is when I received my definitive diagnosis).
AS causes me to take a long time to learn the most basic things such as moving my arm when it’s stuck, eating, sleeping, and lifting my head. Most of my friends are rolling, sitting up on their own, crawling, and pulling up— and I am their biggest fans. I’m just not quite there yet, which makes my mommy and daddy worry a lot. It’s going to take me awhile to stand, walk, crawl, point, clap and wave but I AM DETERMINED and a VERY HARD WORKER! My happy-go-lucky disposition is so joyful and I can’t wait to bring a smile to each of your faces. I will likely communicate with you by other avenues rather than speech, but please don’t be afraid of different! It doesn’t mean I don’t understand or want to talk.
A piece of my chromosome 15 is missing… and it changes everything for me. AS involves one single gene and that makes it one of the most promising neurogenetic disorders to cure. FAST (Foundation for Angelman Syndrome Therapeutics) scientists have cured AS in their labs with multiple approaches and are working to bring the cure to clinical trials as soon as 2019! The work of FAST’s scientists will make a priceless difference in my life and for my AS friends… even if it simply increases our balance, reduces our seizures, or expands our speech capabilities that would be HUGE for our livelihoods.
I love my genetics team and the FAST scientists...I know they are committed to my care, but they cannot do it alone. It takes a village. Please consider donating and raising awareness for FAST and Angelman kids (like me)! We are a very special GIFT to the world as we choose to be happy, loving, and full of life no matter the circumstances. Your generosity means so much! Thank you. Follow my journey and milestones on instagram, @wiles4miles.
Ps. Since AS is a rare disorder, we truly rely on the support of friends and family members to fund this groundbreaking research. Thank you in advance for your generosity.