The story of Aleix
My name is Aleix and I am 8 years old. At the age of 3 I got diagnosed with the MECP2 Duplication Syndrome. A very rare genetic disorder characterized by a wide variety of severe symptoms such as low muscle tone (hypotonia), severe intellectual disability, developmental delays, recurrent respiratory infections, speech abnormalities, seizures, and progressive spasticity.
I am a happy and energetic little boy with a lot of dreams, but as for now the MECP2 Duplication Syndrome has different plans for me. Several super smart people, teams and doctors worldwide, are doing their best they can to find a treatment or to cure the MECP2 Duplication syndrome. With only a few diagnosed MECP2 warriors worldwide, we can only hope for a cure one day. Hope is key. And once we chose hope, anything is possible.
You can check out Aleix’s Instagram account here to connect with other MECP2D families worldwide.