Madelyn “Maddie” was born March 16, 2014, 6 weeks earlier than expected, weighing just shy of 4lbs. She spent her first two months of life hospitalized due to life-threatening conditions. The first few years of her life consisted of multiple specialists, therapies and procedures. Maddie was diagnosed with Angelman Syndrome on May 5, 2016. We were devastated at that time and felt that all hopes and dreams we had for our sweet girl’s future were over.
The doctor told us not to expect much from Maddie, that she would never talk, walk, learn or have any form of a “normal” life. I went directly to the internet and was devastated with what I found. There seemed to be no hope for children with Angelman Syndrome and certainly no cure. Over the next few weeks I continued to research Angelman syndrome and found Paula Evans. Paula’s daughter was diagnosed with Angelman Syndrome about 10 years ago. At the time she was also told that her daughter would never live a normal life. Paula was determined to help her daughter and began her fundraising efforts. Fast forward to today, she has created The Foundation for Angelman Syndrome Therapeutics (FAST). FAST has restored our hope for Maddie’s future. We are now on the breaking edge of a Cure.
Madelyn is now a 6 year old Angel who not only walks but can run, laugh, play, understand and much more. Although Madelyn does not have a voice she is a social butterfly. Maddie is now learning how to communicate through sign language and is starting to use an ACC talking device on an iPad. Madelyn has many friends in and out of school who don’t look at her as “different” but as just another play mate. A few of Madelyn’s favorite things are her baby dolls, pushing her carriages around the house, playing with her cousins and she loves to eat!
Although Madelyn is living her best life, she still has some setbacks. Without a cure, Madelyn will never be able to talk, has a high probability of life threatening seizures, will never be able to drive or do many things that typical children are able to do. All money raised goes to FAST in the hopes to cure Maddie and all other Angels. FAST donates 100% to research. Your donation will be a part of Madelyn's cure. No donation is too small.