Viata mea MMA (My MMA life) is a non-profit organization founded in April 2014 in order to support the growth, health care, physical and mental development of children diagnosed with methylmalonic acidemia (MMA). Currently in Romania are registered few cases (up to 5). Briefly their body is unable to synthesize protein and fats (lipids) properly leading to an accumulation of toxic intermediate chemicals.
It is one of the most serious metabolic disorders, but very rare, about 1 in 50,000 babies worldwide are affected by this hereditary disease transmitted. Babies have side type lethargy, hypotonia, and severe kidney problems, delays in intellectual development, and severe forms directly lead to coma or death. Every crisis can lose body manifested neurological and different physical senses (sight, hearing, walking, etc.). What it is important to know: with proper treatment are very high chances that patients have a normal life.
The complex nature of the disease and limited access to necessary treatments and services make that most often affected families to be the only one in solidarity with the patient, offering support and care. The phenomenon is quite complex and must be understood: the disease is not treated in Romania, synthetic protein indispensable, necessary medicines and pharmaceutical products supply can not be purchased in the country and can not be compensated by the state. Most importantly, protein fibers and special foods that have extracted proteins from them (flour, rice, milk, pasta, crackers, cereal, etc) is essential and mandatory for those affected, they are the most difficult to sustain financially, but is their chance at a normal life if eaten. They need medical supervision and treatment for life, with periodic analysis which is performed only outside the country so far.
As an organization we want to come together with parents, siblings, grandparents, spouses, close relatives and friends whose lives are affected daily and are “daily, hand in hand” with those affected. Why do we exist: to bring hope, to help, to support, to be together, to bring Normality for those who consider the most Extraordinary thing in the lives of affected person.
Support the MMA Life Association and in this way come along with us, conveying together a message of solidarity with the people suffering from MMA and their families. Together, we can transform the individual experience of patients and their relatives into collective action, community support and protection. It is vital to build a community that provides security and assistance.
Thanks for your involvement and for being with us in designing a machine that does not offer the Extraordinary but the Normality.