On May 19th, 2022 we got a call that forever changed our lives.
We received the devastating news that our 19 month of son James has a rare neurogenetic disorder called Angelman Syndrome. Affecting approximately 1 in 15,000 live births or 500,000 people worldwide, individuals with AS typically have balance issues, motor impairment, debilitating seizures, disruptive sleep cycles and development delays. Some do not walk; most do not speak. Thankfully, these individuals typically also have a happy demeanor, characterized by frequent laughter, smiling and excitability. And James most certainly possesses these traits.
To know James is to love him. His smile lights up the room, and he gives the absolute best hugs. His personality is infectious as is his laughter (and it is very easy to make him laugh)! Although James cannot speak, and verbal communication is something that we will continue to struggle with in the future, he communicates in other non verbal ways and we expect him to continue to do so.
We have been truly inspired by the Angelman Syndrome community of parents, children and families and have already been personally touched by many people who have taken the time to talk to us about their experiences with raising a child with AS. Hearing them speak about FAST and the work that the foundation has done to advance many different therapies in an effort to find a cure has been nothing short of inspiring and because of this we are so hopeful that there will be a cure that will help James do so many of the things that we all take for granted every single day.
Please help us join in the fight to Cure Angelman Now.
Better Days are Coming!