Be part of Viata Mea MMA team and run at The Raiffeisen Bank Bucharest Marathon!
We are small and we desire to remain small but big-hearted people enough to create miracles. 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.
How many children we are trying to support?
3 – The Fantastic 3: Edu, Rares, Ari
We need you in order to help them grow as any NORMAL kids! We need you in the team! We call you to run together with us on October 13th-14th for DIVERSITY. Through our projects we try to raise funds for:
- EDU – support therapy hours sessions for 1 year, so in September 2019 Edu to be able to go on a normal school in first class.
- RARES – support the cost of medical food for 1 year, for reducing the metabolic crises risk
- ARI – support the cost of a hydro kinetic fee for 1 year, for recovering the actual deficiency.
Contact: Ana Maria Ivascu Fonder Member; phone: 0745 047 681. Last call on 28th of September.
If you can’t run this year, you can also help us in others ways:
- As a volunteer on the race days. We need help to encourage runners on the route, take pictures and movies to promote on our Facebook page (Asociatia-Viata-mea-MMA-Page ), to help us on the hydrating point, to make fun and bring smiles. Send us a message to [email protected] with your contact details and we will contact you.
- As a donor. Send us a message to [email protected] and we will help you with all the details you need.
- Spread the word. Tell your friends about Viata MEA MMA team and our goal. Encourage them to be near us. 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.
See you at the marathon in Constitution Square, on October 13th-14th!