Our family was so excited when we found out we were having a baby. We soon did a gender reveal and learned Remi would join. We were over the moon with joy. I had all the early screening tests done. All test came back normal. On January 15th 2016 we finally met Remi Morgan Matheson. Our family was complete. 4 girls and 1 boy. Remi was a beautiful baby everyone commented on how beautiful and happy she was. She rarely cried and laughed all the time. She had the most beautiful smile and infectious laugh. I had no idea that was one of the signs of Angelmans. At about 9 months we started seeing delays in hitting her milestones. I took her to her pediatrician and multiple therapists, all thought it was due to us being on the go so much and needed more floor time. That's what we did. She did start crawling at 18 months. Remi was referred to a pediatric neurologist. He advised us to do genetic testing. On June 12th 2018 we got the results back that Remi did have Angelman syndrome. Our family was devastated. We had never even heard of AS. Immediately we started learning everything we could about this syndrome. We doubled all her therapies and got her all new team of doctors.
Remi is making great strides she is walking independently and signing some of her needs/wants. My hopes and prayers are that I will soon hear her say mommy. With the new therapies that are being developed this could be a possibility. Remi will redefine Angelman syndrome.
I've created this page because I'm
inspired by the breakthroughs
being made by FAST, and I want to
do my part by raising money to fund clinical trials for Angelman syndrome (AS). FAST researchers know exactly what causes AS and have already cured it in the laboratory. Today, five therapy strategies are in development to treat Angelman syndrome. Your donation to my page helps fund all of them. Please help me support this critical research by clicking the “Give Now” button and donating whatever you can. Every single dollar counts and is appreciated! The more people that know about FAST, the greater their impact, so please also spread the word by sharing my page with your contacts. 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.