Remi’s Story
Our family of six was so excited when we found out we were adding one more to the mix. We did a gender reveal and were over the moon with joy when we learned Remi would join us. All our pregnancy tests came back normal, but little did we know Remis’ life would be far from it.
On January 15, 2016 we finally met Remi Morgan Matheson. Our family was complete — four girls and one boy. People always commented on how beautiful and happy Remi was as a baby. She rarely cried, had the most beautiful smile and an adorable laugh. We had no idea that was one of the signs of Angelman Syndrome.
At about nine months Remi showed delays in hitting her milestones. We consulted with her pediatrician and multiple therapists — all thought it was due to us being on the go so much and we needed more floor time with Remi. So that’s what we did. After Remi started crawling at 18 months, she was referred to a pediatric neurologist who advised us to do genetic testing.
On June 12, 2018 we received the results and learned that Remi had Angelman Syndrome. We had never heard of AS and this news was devastating for our family. Immediately we started learning everything we could about AS. We doubled all of her therapies and consulted with a team of new doctors.
Remi is making great strides — she has learned to walk, run, ride a tricycle, and is able to communicate through sign language and her AAC device. She has spoken a few words — “momma” being one of them. Our hopes and prayers are that we will soon hear the words “daddy” and “I love you” from her sweet little voice.
With the new therapies that are being developed, this IS a possibility. Remi continues to redefine what is possible with Angelman Syndrome. Our family believes Better Days Are Coming!
Together we CAN cure Angelman syndrome. Foundation For Angelman Syndrome Therapeutics (FAST) researchers know exactly what causes Angelman syndrome (AS) and have already cured it in the laboratory. Much of this pioneering, critical research was funded by our FAST community. Today, this research has led to the announcement of several revolutionary clinical trials that hold the potential to treat, and ultimately cure this rare disorder.
Please help us support this critical research that CAN make a significant difference in the life of our loved ones living with AS. Your donation will help fund critical research to accelerate the therapeutic pipeline that will benefit all individuals living with AS, regardless of age or genotype. Thank you in advance for your generosity!
