Street artist Dados Punto Cero has painted a mural of the brave and beautiful Alex, a young boy living with Methylmalonic Acidemia. Dados Punto Cero’s playful and colourful mural is a powerful reminder of the challenges individuals and families face living with rare diseases.
Methylmalonic acidemia is a group of inherited disorders that prevent the body from breaking down proteins and fats (lipids) properly. The effects of methylmalonic acidemia, which usually appear in early infancy, vary from mild to life-threatening. Affected infants can experience vomiting, dehydration, weak muscle tone (hypotonia), developmental delays, excessive tiredness (lethargy), an enlarged liver (hepatomegaly), and failure to gain weight and grow at the expected rate (failure to thrive). Long-term complications can include feeding problems, intellectual disabilities, movement problems, chronic kidney disease, and inflammation of the pancreas (pancreatitis). People with methylmalonic acidemia can have frequent episodes of excess acid in the blood (metabolic acidosis) that cause serious health complications.medlineplus.gov/genetics/condition/methylmalonic-acidemia/
The mural in León, Spain, depicts Alex playing with his measuring jug and syringe, symbolising a different way of life from other children his age, relying on a gastric button for nutrition, taking medication regularly, and struggling with kidney problems. Being curious, Alex is pictured taking it all his in stride and playing with the apparatus.
By featuring Alex in his mural, Dados Punto Cero hopes to bring attention to Methylmalonic Acidemia and other rare diseases, which often go unnoticed due to inadequate research funding.
“Research is the key to achieving a higher quality of life for these children, and who knows if one day there will be a cure. However, no public funds are allocated to research Methylmalonic Acidemia, nor many other rare diseases, which limit the lives of children who suffer from them. It is necessary to give visibility to these diseases and fight for their study.”Dados Punto Cero
The mural serves as a beacon of hope for those living with rare diseases and a reminder that they are not alone in their struggles.
Through his art, Dados Punto Cero uses his platform to create a more compassionate and understanding society; this mural raises awareness and much-needed conversation around Methylmalonic Acidemia.
Photo Credit Dados Punto Cero