Laura Sargent

Our journey to an AS diagnosis has been a journey of ups and downs- we welcomed a healthy son in 2016 and found out we were expecting twin girls 16 months later! Being a pediatric nurse practitioner in the NICU follow-up clinic, I was versed on the potential risks related to twin pregnancy and birth. We were thrilled to carry the girls to full term with a healthy delivery and no NICU time. Almost immediately, I recognized differences in the girls’ feeding patterns, sleep, muscle tone, and developmental milestones. I was met with reassurance and told repeatedly twins develop on their own timeline! We switched pediatricians three times before we finally were able to get someone to listen to our concerns- a microarray was ordered, and, 6 weeks later we discovered Maddie lives with Angelman syndrome. We were completely heartbroken and grieved for Maddie (and our other children’s) future. However, we sought out support and discovered FAST, an organization that instilled a sense of hope and belonging. The past four years, Maddie and her siblings have taught us so many life lessons that center on resilience, perseverance, and never giving up! Maddie has shown us that she can achieve the unachievable, believe in the unbelievable, and understand nothing is impossible. We believe FAST can and will find a cure.