We are a family of four living in Cerritos, California. Our first born Nathaniel is nine years old(typical) and Madelynne is three. Maddie was born March 28th, 2012. When she couldn't sit on her own at 8 months, didn't crawl at 10 months and didn't cry as a form of communication during her first year of life, we knew something was wrong. So we started physical therapy when she was 12 months old. She kept falling further behind with her physical milestones(crawling, standing, walking, etc) but since she was progressing, her physician ruled out cerebral palsy. We were still hopeful that Maddie would be able to catch up but as more time passed it was clear that something was wrong. On December 2013 Maddie was diagnosed with Angelman Syndrome through genetic testing.
Just like most people, we had never heard of AS. That is because it is a very rare genetic disorder that affects about 1 out of 15,000 births. Well the good news was the internet had tons of information about AS as we became obsessed in educating ourselves about Angelman Syndrome. But the bad news was, the dreams and aspirations we had for Maddie's future came crashing down. Like many parents, overwhelmed and emotionally shocked we knew our lives were about to change forever.
Today, by the grace of God, Maddie is a happy spirited girl who loves her family and especially her big brother. She is very social and loves water play like many of the kiddos with AS. She goes to early intervention school in our district and has occupational therapy, physical therapy, and speech therapy. She is a great walker and has been babbling a lot. She can say "mom", "dad", and "brother" in Korean. And she also understands both English and Korean. She can communicate through sign language as well. She can sign about 10 words. Her receptive language is her strength. She is able to follow directions and communicate in her own way. But due to her complex communication needs, we realize she does have limits. So now she's currently using PODD as her AAC (Augmentative and Alternative Communication) device. With her PODD we are modeling it everyday. Our whole family is learning a whole new language. Maddie works really hard to be where she is today as she keeps exceeding our expectations.
Maddie has been dealing with Acid Reflux since she was an infant and now she's also dealing with seizures. We have been able to keep it all under control with medication.
Our hopes and dreams for Maddie is to be healthy, never take no for an answer and always believe that the sky is the limit!