Not everybody in this world is lucky enough to have the time, the means, or most importantly the health to go on a long journey like the one we are embarking upon. It would give our adventure a deeper meaning if it could be used for the benefit of those less fortunate than us.
Therefore, we would like to increase the awareness and raise funds for the research and treatment of the Angelman syndrome. We had never heard of this syndrome before hearing the news from our friends that their daughter had been diagnosed with it.
Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia). Most affected children also have recurrent seizures (epilepsy) and a small head size (microcephaly). Delayed development becomes noticeable by the age of 6 to 12 months, and other common signs and symptoms usually appear in early childhood.
Children with Angelman syndrome typically have a happy, excitable demeanor with frequent smiling, laughter, and hand-flapping movements. Hyperactivity, a short attention span, and a fascination with water are common. Most affected children also have difficulty sleeping and need less sleep than usual.
Thank you!