The story of sakon
Charm, 4-year-old girl from Thailand.She is ill with inherited metabolic disorders, Adenosine Kinase Deficiency. She is the only patient with this disease in Thailand and the world is still very rare.
Inborn error with a history of poor feedingฺ, neurodevelopmental delay, epilepsy and mucular hypotonia. There is currently no cure. Can only control the intake of methionine from food at an appropriate level. We try to search for patients with this disease. To exchange information for use as a guideline for take care my daughter. She has seizures everyday. We will continue to fight for her better life.
https://www.facebook.com/AdenosineKinaseDeficiency/